We're in the home stretch now, all systems are go, we just cruised past the 7th inning stretch and other then Ozzy Osbourne decimating "Take me out to the ballgame", and we're ready to get the heck out of there. I feel like Tim Robbins in Shawshank Redemption after he crawled through 300 yards of sewer lines to escape prison but in the end it was all worth it, except Hope went through much more then me. I do feel a bit like Red (played by Morgan Freeman) as the guy that knows how to get things done as I've learned to work the hospital system, docs especially, to get what we want. For example, Hope has a wheelchair outside of our room with a sign on it that says for 244 only that I'm going to take her outside on for the first time today. I convinced one of her many docs that after 3 weeks in hospitals they needed to get her unhooked for at least a couple of hours so we can go outside without the coatrack. They unhooked her yesterday except for feeding and drug times so we'll be out this afternoon. One of the nurses told us wheelchairs are hard to come by and she's never seen them do that before. Anyone need a life-size poster of Rita Gardner or a sculpting tool for chess pieces???
She's talking better every day, feeling less dopey and tired, and happy to poop and pee on her own. Ahhhh, the little things so many of us take for granted. I went home Saturday to coach Nate Dog's basketball game and see the kids for the first time in a week. We tied 12-12 on two late baskets by Nate's team so now my career coaching record is 1-1-1. Not hall of fame numbers yet, but we have 5 more games in the season. I'm worried though, our by far best player and overall stud, Kim (our lone girl) is going to miss the next two games. Her family some how thought a family vacation outweighed basketball and I could not convince them to let her stay with us (or Hope for that matter) to help my career basketball record. I think their priorities are way out of whack (me first, then the rest of the world) so they're still going. I do like them though still, they're from New England and big Celtics fans. The mom played college ball in NH, but I forgot where they said now.
After basketball we hit our usual, Beef O'Brady's with my Mom. The kids love that place although it's not that easy for us to find something good it has all the kids staples and prizes afterwards if they eat good and they always eat good there. I like it because I can get a beer and watch any one of dozens of TV's with nothing but sports all around. Nathan loves picking out a game whether we know any of the teams or not and just picking one to route for. He really gets into them, says things like "they're cheating dad, see all the fouls." When he gets Reese into it (and that's hit or miss) they start calling the other team stinky and potty words he's only supposed to use in the bathroom. I can't imagine where they learn to say such things watching sports. Just as an aside though, if that no good stinkin' poopy faced Kobe drives the lane one more time and gets bailed out by the cheating refs trying to keep a hapless Lakers team in the series for televesion ratings I'm going to scream. Then some times I do. Anyway, kids are so impressionable and must pick these things up from their friends.
I'm sure Tampa is a great city, so no offense to Esther and John, Kurt and Ann-Marie who used to live here (not together --- at least that I'm aware of) but we're happy to be leaving and not coming back for a while. If we come back I hope it's to ride the coasters at Busch Gardens and if I never drive on I-4 again I would be a happy boy. We do have to keep packing Hope's mouth and neck 3 times a day, she'll keep her stomach feeding tube, and we'll be watching her trache hole and healing leg/neck closely so we'll have some adjustments at home. We already have to portable coat rack on wheels and other supplies we need from our first run at the house so we should settle in quickly. Both of us are looking forward to sleeping in our own bed, and actually together in it for the first time in 3 weeks.
I did sleep in Hope's hospital bed the last couple of nights. The miserable chair they gave me is very narrow with these hard wooden handrails on both sides, it's this sticky vinyl material, and all it does is lean back about 45 degrees with a foot rest. It does not even lay all the way back. You would think with a multi-gazzilion dollar facility (did I mention it's freaking huge?) they could get some decent cots, blow-up mattresses, or something else that could squeeze into these tiny rooms for loved ones to sleep on. Once again they're not putting my needs first, and I don't understand why everyone can't do that. It was nice to sleep with my wife again, even if it was in a hospital bed. This is our home stretch literally, all we need to finish it off is the stretch limo ride home but we'll save that for another day. I did learn that my mom has never ridden in a limo yesterday, and that Nathan and Reese have counted 16 taxi cabs and 13 limousines (Nathan does like the word limo) since we came back from NY. You have to love what kids keep track of, I cannot even keep track of our doctor's and nurses names and they know how many cabs they've seen. They're the best, and we'll be back together as a family soon.
Sunday, June 29, 2008
Friday, June 27, 2008
Fabulous Friday
Friday afternoon and while most of you are pining to get off work we are nowhere near an office just hanging out at the TGH. I think it kind of sounds cool calling it the TGH, kind of like 90210 instead of old people trying to look young while they have tragic events that occur once each week including falling madly in love with your best friends each week (normally a different one) while another friend tries to steal them away. So we're hanging at the TGH. Hope is doing better, talking a bit more now and it's getting harder to pretend I don't understand when she wants me to do something. She is swallowing we think on her own some because she's not vaccuuming nearly as often in her mouth. Her swelling has reduced even more, she's now reduced from Peter Griffin to mid-life Elvis. She had her staples removed from her leg and it's healing well. She's got some really cool scars that will disappear for the most part over time but have been working on stories to tell people. My favorite is that she took on a group of rogue bikers while I cried in the corner because they made fun of my Dora fanny pack. Well Reese wouldn't wear it and I couldn't let it go to waster. Any other ideas out there, we'll take them. She is supposed to get her neck sutures out today and stomach sutures for her tube on Monday so we're progressing well.
We're hoping to get out of here on Monday, so everyone envision Hope walking out of here on Monday while I carry the 7 bags we have accummulated in the room since our arrival. I brought two more in today including her hair dryer and a bag full of lotions that I couldn't believe from our house. I swear we have more lotions in our house then Macy's and that's just in my nightstand (oops, probably shouldn't have given out that much information). A huge thanks goes out to Esther and John (Hope's brother and sister in law, not necessarily in that order) for hanging out while I ran home for some work and laundry yesterday. Please don't tell Hope I know how to do laundry, it's taken me years to convince her otherwise. Do you know how many of her shirts I've had to ruin to get that rep? I also cleaned up the house because it was the first time back since we abruptly ran out on Sunday morning. Once again, Hope thinks I cannot vaccuum or do the dishes so would a grandmother please volunteer to take the credit for this work? I'll take the blame for the beer bottles and porn across the house unless a grandmother wants to take that hit too.
Hope just got back into bed from a successful poop (yes you get all the details from me) which is another good sign. She still has the catheder in but her pee bag is almost full and when she walks with the coat rack of drugs it waves around like our pool when Kurt cannonballs (that's some serious splashing by the way). You may notice I make fun of my brother a lot because it's easy to do, it's all true, and his wife reads the blog instead of him so she enjoys it. Anyway, Hope is really starting to be awake and sober a lot more (can't say the same for me) as I'm ready for a long comatose nap and definitely some desoberization soon (that sounds better to me and much more medical). I'm off to my desoberization group honey, don't wait up (that's Mons Venus with the boys). We'll keep you posted, and remember to please keep commenting as Hope loves to hear what you guys have to say and think although she's not always crazy about what I say. Thanks to you all for helping us through this!
We're hoping to get out of here on Monday, so everyone envision Hope walking out of here on Monday while I carry the 7 bags we have accummulated in the room since our arrival. I brought two more in today including her hair dryer and a bag full of lotions that I couldn't believe from our house. I swear we have more lotions in our house then Macy's and that's just in my nightstand (oops, probably shouldn't have given out that much information). A huge thanks goes out to Esther and John (Hope's brother and sister in law, not necessarily in that order) for hanging out while I ran home for some work and laundry yesterday. Please don't tell Hope I know how to do laundry, it's taken me years to convince her otherwise. Do you know how many of her shirts I've had to ruin to get that rep? I also cleaned up the house because it was the first time back since we abruptly ran out on Sunday morning. Once again, Hope thinks I cannot vaccuum or do the dishes so would a grandmother please volunteer to take the credit for this work? I'll take the blame for the beer bottles and porn across the house unless a grandmother wants to take that hit too.
Hope just got back into bed from a successful poop (yes you get all the details from me) which is another good sign. She still has the catheder in but her pee bag is almost full and when she walks with the coat rack of drugs it waves around like our pool when Kurt cannonballs (that's some serious splashing by the way). You may notice I make fun of my brother a lot because it's easy to do, it's all true, and his wife reads the blog instead of him so she enjoys it. Anyway, Hope is really starting to be awake and sober a lot more (can't say the same for me) as I'm ready for a long comatose nap and definitely some desoberization soon (that sounds better to me and much more medical). I'm off to my desoberization group honey, don't wait up (that's Mons Venus with the boys). We'll keep you posted, and remember to please keep commenting as Hope loves to hear what you guys have to say and think although she's not always crazy about what I say. Thanks to you all for helping us through this!
Wednesday, June 25, 2008
Hump Day
Yes I think we're over the latest hump on hump day, out of ICU and into a real room. We're in H-244, but Hope is still asking not to have any visitors (Aunt Renie (Maine) and Kris (CA) that means you too). So many of you have offered to come by and we really appreciate it, but she's still pretty dopey (I love that I can call her dopey and not get mad) sleeping most of her days away. Still no word on when we'll be coming home, latest guesstimate was Friday to Monday. A lot of that depends on not only her progression, but also what kind of home healthcare help we can get and that can be tough over the weekend. We're hoping for some Kathy Bates style nursing like in Misery. The last 3 weeks have felt about like that. Our room is a single but it's tiny. For me to get to the door I have to get frisky with Hope. As always, sick or not, she's just annoyed by that (I'm sorry I give out way too much information some times).
More importantly last night the Red Sox had a dramatic 8th inning rally to come back from a 4-1 deficit to win 5-4 to stay up on the Rays. Tonight our homeboy from Melbourne Tim Wakefield pitches on national television against Randy Johnson in Fenway so I know all of you will be tuned in (especially Shelby) staring and licking your lips like Hannibal Lechter with every Red Sox run. Both kids are still sick, my mom has them at the doctors right now. The kids were so sweet, they asked if they would see Mommy at the doctor's office. Reese has two ear infections and Nathan pink eye, so unfortunately even when I go home tomorrow for some work stuff I can't even see them. I just can't risk bringing anything back to Hope. I think when I do I'll pull a Dustin Hoffman from Outbreak and wear the full body suit and respirator to do my own Darth Vader breathing. Is it weird to this day I still want a light saber (John please let me know if I spelled that incorrectly). Both kids are not acting too sick, having a blast with both grandmas alternatively. We're lucky to have them and so many other loved friends and family around to assist so we don't have to worry about our kiddos.
They just weighed Hope and she is upset she's only lost 5 pounds so far. I'm shocked it's not more so I think the whole weighing someone on a hospital bed may not be that accurate. Don't worry about me, I still have my Slater physique from Saved by the Bell. By the way I caught an episode this morning while checking out of the hotel (I'll now be staying at the luxurious Tampa General Hospital with one of those twist you in a pretzel fold-down seats that is less comfortable then sleeping in the car). I think I'll ask Hope to switch beds with me each night. It was great to see Tiffani Amber-Thiessen again in her glory days (was on my list but now is off) and Zack was hooking up with the wife from King of Queens (I have never actually seen that show so any input from our blogging friends is appreciated since it seems to be on re-runs 24 hours per day) while they worked summer jobs at a beach resort. The "wish I didn't have the show on" moment for me was when Screech took off his shirt, I just must have repressed that memory from when I used to watch that show habitually because that one caught me off-guard. It was disappointing not to have Mr. Belding in the episode, but the swimsuits made up for it. The show has a special place in Hope and my history, we used to watch it all the time together in college when we weren't at church. Just a warning, grand and great-grandmothers may want to stop reading here.
And just for the record Jamie, hump day is only because it's the middle of the week. Funniest sign I can remember seeing at KSC in my life and I have pictures of it so you don't think I'm making this up, right behind the VAB is a small train yard and they have signs at the end of the trains that say "no humping." I don't know why that cracks me up so much, and you've got to be some kind of pervert to want to hump a train. I haven't been to the website yet that has that fetish, any suggestions Kurt? We love you all, thanks for the support.
More importantly last night the Red Sox had a dramatic 8th inning rally to come back from a 4-1 deficit to win 5-4 to stay up on the Rays. Tonight our homeboy from Melbourne Tim Wakefield pitches on national television against Randy Johnson in Fenway so I know all of you will be tuned in (especially Shelby) staring and licking your lips like Hannibal Lechter with every Red Sox run. Both kids are still sick, my mom has them at the doctors right now. The kids were so sweet, they asked if they would see Mommy at the doctor's office. Reese has two ear infections and Nathan pink eye, so unfortunately even when I go home tomorrow for some work stuff I can't even see them. I just can't risk bringing anything back to Hope. I think when I do I'll pull a Dustin Hoffman from Outbreak and wear the full body suit and respirator to do my own Darth Vader breathing. Is it weird to this day I still want a light saber (John please let me know if I spelled that incorrectly). Both kids are not acting too sick, having a blast with both grandmas alternatively. We're lucky to have them and so many other loved friends and family around to assist so we don't have to worry about our kiddos.
They just weighed Hope and she is upset she's only lost 5 pounds so far. I'm shocked it's not more so I think the whole weighing someone on a hospital bed may not be that accurate. Don't worry about me, I still have my Slater physique from Saved by the Bell. By the way I caught an episode this morning while checking out of the hotel (I'll now be staying at the luxurious Tampa General Hospital with one of those twist you in a pretzel fold-down seats that is less comfortable then sleeping in the car). I think I'll ask Hope to switch beds with me each night. It was great to see Tiffani Amber-Thiessen again in her glory days (was on my list but now is off) and Zack was hooking up with the wife from King of Queens (I have never actually seen that show so any input from our blogging friends is appreciated since it seems to be on re-runs 24 hours per day) while they worked summer jobs at a beach resort. The "wish I didn't have the show on" moment for me was when Screech took off his shirt, I just must have repressed that memory from when I used to watch that show habitually because that one caught me off-guard. It was disappointing not to have Mr. Belding in the episode, but the swimsuits made up for it. The show has a special place in Hope and my history, we used to watch it all the time together in college when we weren't at church. Just a warning, grand and great-grandmothers may want to stop reading here.
And just for the record Jamie, hump day is only because it's the middle of the week. Funniest sign I can remember seeing at KSC in my life and I have pictures of it so you don't think I'm making this up, right behind the VAB is a small train yard and they have signs at the end of the trains that say "no humping." I don't know why that cracks me up so much, and you've got to be some kind of pervert to want to hump a train. I haven't been to the website yet that has that fetish, any suggestions Kurt? We love you all, thanks for the support.
Tuesday, June 24, 2008
211 Steps Forward
My Hope is back! She's awake a lot more this morning basically for the first time in 3 days getting mad at me, talking a bit, communicating otherwise by note pad, not in too much discomfort (morphine helps with that too). I think we've regained 211 of our lost 212 steps, although we're still hanging in ICU at Tampa General Hospital. I just keep imagining we're really at General Hospital and any minute Felicia (on my list) will come through our giant creeky wood doors to proclaim her love for me. Unfortunately each time it's Matt, our RN, but I haven't given up hope yet on Felicia. Sorry Matt, no Rocky fetish for you (you're probably relieved actually).
No word back on the culture yet, so we don't know what the infection is but her swelling is reducing so they think it's dissipating from the 48 gallons of antibiotics they've poured through her veins. They are still packing her mouth and neck every 6 to 8 hours where the infection is (her neck) and where her tongue flap came loose (her tongue of course). It's cool to watch them pull out the bloody gauze each time they do it, kind of reminds me of the movie Hostel when the chinese ladies eyeball is sticking out from them burning her face off with a blow torch and her friend has to cut it off with scissors. I'd be furious though if after I did all that you just go and jump in front of a train, not cool for future reference with friends that read this. By the way, I don't recommend that movie to Hope's grandmama who I know is now reading my blogs. I do apologize also for the language in the first couple, in hindsight. Every once in a while I slip up use words Kurt taught me growing up.
We still have no idea when we will get out of ICU, but I cannot really see the purpose of us hanging here much longer. It would be great to get into a real room, they are so much more comfortable, the risk of infection or other disease is much less, and it's just depressing here. So many folks don't ever leave ICU, we're just lucky enough to be frequent visitors. Although right now it feels to us like the hotel California from the classic Eagles tune, you can check out any time you want but you can never leave.
The boys are doing great, Nathan at zoo camp each day this week starting today since he was sick on Monday with his buddy Mark. Reese was feeling bad yesterday too but is feeling much better today. He got to hear Mommy's voice for the first time this morning since we ran out Sunday, and he was thrilled. We wish we could be home or at least know when we can go home but hopefully more answers later today or tomorrow. The most important thing is while we can go insane short term we hang here for Hope's long term health and recovery.
Erwin (actually Erin who was recently married and took the name Kolin so her e-mail is now Ekolin so we call her Ecoli and I'm pissed at her friend salmonella that is taking my favorite tomatoes away from me --- wow that was an unrelated rant bad for even me) at my office had a dream Sunday night that she was at a party and Hope was talking just like always and chasing our kids around. That's our dream too, soon to be a reality. The party was probably one of my infamouse scriptures and calculus refresher parties that I'm always throwing to keep up our skills just in case you need to use calculus or differential equations in your every day life. You just can't brush up on them enough I always say. I'm going to work on my food on a stick menu right now, gotta run but it's great to have my Hope back.
No word back on the culture yet, so we don't know what the infection is but her swelling is reducing so they think it's dissipating from the 48 gallons of antibiotics they've poured through her veins. They are still packing her mouth and neck every 6 to 8 hours where the infection is (her neck) and where her tongue flap came loose (her tongue of course). It's cool to watch them pull out the bloody gauze each time they do it, kind of reminds me of the movie Hostel when the chinese ladies eyeball is sticking out from them burning her face off with a blow torch and her friend has to cut it off with scissors. I'd be furious though if after I did all that you just go and jump in front of a train, not cool for future reference with friends that read this. By the way, I don't recommend that movie to Hope's grandmama who I know is now reading my blogs. I do apologize also for the language in the first couple, in hindsight. Every once in a while I slip up use words Kurt taught me growing up.
We still have no idea when we will get out of ICU, but I cannot really see the purpose of us hanging here much longer. It would be great to get into a real room, they are so much more comfortable, the risk of infection or other disease is much less, and it's just depressing here. So many folks don't ever leave ICU, we're just lucky enough to be frequent visitors. Although right now it feels to us like the hotel California from the classic Eagles tune, you can check out any time you want but you can never leave.
The boys are doing great, Nathan at zoo camp each day this week starting today since he was sick on Monday with his buddy Mark. Reese was feeling bad yesterday too but is feeling much better today. He got to hear Mommy's voice for the first time this morning since we ran out Sunday, and he was thrilled. We wish we could be home or at least know when we can go home but hopefully more answers later today or tomorrow. The most important thing is while we can go insane short term we hang here for Hope's long term health and recovery.
Erwin (actually Erin who was recently married and took the name Kolin so her e-mail is now Ekolin so we call her Ecoli and I'm pissed at her friend salmonella that is taking my favorite tomatoes away from me --- wow that was an unrelated rant bad for even me) at my office had a dream Sunday night that she was at a party and Hope was talking just like always and chasing our kids around. That's our dream too, soon to be a reality. The party was probably one of my infamouse scriptures and calculus refresher parties that I'm always throwing to keep up our skills just in case you need to use calculus or differential equations in your every day life. You just can't brush up on them enough I always say. I'm going to work on my food on a stick menu right now, gotta run but it's great to have my Hope back.
Monday, June 23, 2008
One Step Forward, 212 steps back
The good news is I'm back blogging, the bad news is because Hope can't and we're in ICU in Tampa again, this time at Tampa General Hospital. We had to come here because Moffitt does not have an ER and I'll explain that in more detail in a bit. Most importantly right now, the Red Sox traded for a tough as nails guy like Kevin Youklis and his first ever walk-off home run kept the Red Sox up on the very game Tampa Rays that everyone around here is cheering while I quietly curse them when I get out once in a while. Hope by the way is sleeping with a lot of morphine and we are awaiting surgery for her to have her nose feeding tube removed and a stomach tube put in. The nose feeding tube had been an absolute nightmare so they're making the switch at our request. This kind of feels like Groundhog Day, without the annoying sales guy but unfortunately with more nurses and doctors that I could imagine. At least I have my Andie MacDowell in front of me rehealing.
We got home late Friday, let Hope shower and set up the house the best we could on Saturday for her recovery along with getting our two little wonders home. It was really great to be home, we even had a home nurse come by to assist. The kids came home early Saturday morning, and the love and fun was aplenty. They kept commenting on Hope's swelling, but the nose tube didn't even seem to be a bother. It was really great except the struggle Hope was having with the feedings, and some other issues with her mouth and trache hole that were more for scenes from Texas Chainsaw Massacre then anything else I'll put in detail. Did you know they actually made a remake of Texas Chainsaw Massacre recently with Matthew McConaughy (sorry ladies if I screwed up his name). I came across it one late night edited for TV. It lasted about 10 minutes edited and I currently have a law suit with Mr. McConaughy asking for my 10 minutes back.
By the way he is on Hope's list so there's that much more reason for the lawsuit. If you don't know about the list it goes back to a Friend's episode. You can list 5 famous people you are allowed to sleep with without repercussions. Let's just say for me if Queen Elizabeth ever comes to Melbourne Hope better hope (that kills me for some reason) I don't turn on the old charm like Leslie Nielson did in the first Naked Gun Movie. By the way, that scene is still one of my top 10 of all time for comedy scenes when he goes to the bathroom with the microphone after just making fun of the English government.
Sunday morning we had the kids playing and Hope doing her normal mouth vaccuuming when she started bleeding profusely through the mouth and trache hole. I immediately got the kids into our bedroom, got Hope calm and called 911. Hope's mom ran over (thank goodness she lives nearby) and we ran off to the ER. The kids never even saw the ambulance or Hope bleeding because I had them in our room with the door shut watching TV. They thought we just had an appointment. At the hospital, they did not want to mess with surgical repaired mouth/tongue so all they did was give her some pain meds, fill her mouth with gauze, and try to stop the bleeding. We had no idea what was wrong and neither did they. The amount of blood was unbelievable and I won't go into any more detail then that.
We got in touch with her surgery docs and they insisted she immediately be airlifted to Tampa so they could see what happened. So that put the local ER on alert that they were done with us except to keep the bleeding stopped. That meant we sat their for hours holding gauze up against her mouth as they "immediately" worked on the helicopter. Hope started passing out from the pain meds so I got to hold the gauze for a good part of the time. I could not leave the room easily to get updates so we sat and sat and sat. Finally we find out thunderstorms were keeping the helicopter grounded so we'd go by ambulance. Great, they would obviously have to have an ambulance around at the hospital, right? Right!?! Nope, that's a special transfer ambulance but we were assured it would be there in 30 minutes. Almost 2 hours later the EMT guys come strolling into our room so I asked what happened. I learned a long time ago not to immediately be upset because some times it was a delay for a heart attack or something more urgent. They just said nobody told us we should use the lights and sirens. I wanted to scream like any victim in any Friday the 13th movie (can you believe they actually made 13 of those movies). My personal favorite was the one with the girl scantily dressed heard a strange noise in the woods and then walks out to see what it was by herself calling out to her boyfriend after already hearing the stories about Jason and the fact that her boyfriend disappeared just minutes earlier. Oh that's right, that was all of them!
They finally take her by ambulance to TGH and I drive separately after running home to say goodbye again to the kids and pack some things still having no idea what was wrong with Hope. Saying goodbye to two sick kids crying for their mommy and asking me not to leave was one of the toughest things I've ever had to do. I stayed strong though and told them that Mommy would be fine without a tear (of course knowing nothing at that point except they thought it was bad enough to need a helicopter and the ER doc warned us she could bleed out, lose the artery, all sorts of other horrors "just so we were aware" of the dangers he said). We drove through horrific storms, sometimes going as slow as 30 MPH on the highway just to see enough to keep going. I was not stopping though. I figured I'd make it to the hospital driving or riding in the back of another ambulance if necessary. Well to make a long story short, the directions given were wrong, the storm made it impossible to see at times, I have to thank Man-Marie (no typo again Anna --- that's her endearing nickname) for helping me over the phone even though the maps she was looking at were not updated with the construction out here. It was kind of like that one episode on Three's Company when there was a misunderstanding, oh that's right that was all of them.
The hospital is freaking huge, kind of like the Pentagon except with better security. Later on when we were in ICU I told the nurse that this was the biggest ICU I had seen (and we've seen a bunch of them across Florida and even in SC) and she said this was only 1 of 10. This place is freaking huge! I finally make my way to the trauma room of the ER and they keep it 90 degrees because it's good for trauma patients. Well it's not good for poor Hope who had a 103 fever and they insisted on keeping covered up. So there we sat again for at least another hour or two, I started to lose track at this point. I told the nurse they wanted to fly her over but they drove instead of the weather. Couldn't the ambulance had let you guys know when they were getting close to get the doctor here when she arrived or soon thereafter??? One doc finally gets there but he doesn't want to do anything until another one arrives. By this time I'm losing it when I find the other doc is our original surgeon. You know if someone just told us that's what we were waiting for we would have understood. When Hope realized he was there she was so relieved. After all the drugs in her system she still beamed when she realized it was him.
He immediately went into her mouth and to his credit let me stay the whole time and watch. Hope gets freaked out a lot with all the drugs (see previous blog stories) so I can normally calm her down immediately. This way I get to find out what's up right away and provide input to what she had been given, eaten, and generally gone through over the last 24 hours. I won't go through the next process in detail as it was not fun but my favorite anectdote was as follows (after the fact of course):
We got home late Friday, let Hope shower and set up the house the best we could on Saturday for her recovery along with getting our two little wonders home. It was really great to be home, we even had a home nurse come by to assist. The kids came home early Saturday morning, and the love and fun was aplenty. They kept commenting on Hope's swelling, but the nose tube didn't even seem to be a bother. It was really great except the struggle Hope was having with the feedings, and some other issues with her mouth and trache hole that were more for scenes from Texas Chainsaw Massacre then anything else I'll put in detail. Did you know they actually made a remake of Texas Chainsaw Massacre recently with Matthew McConaughy (sorry ladies if I screwed up his name). I came across it one late night edited for TV. It lasted about 10 minutes edited and I currently have a law suit with Mr. McConaughy asking for my 10 minutes back.
By the way he is on Hope's list so there's that much more reason for the lawsuit. If you don't know about the list it goes back to a Friend's episode. You can list 5 famous people you are allowed to sleep with without repercussions. Let's just say for me if Queen Elizabeth ever comes to Melbourne Hope better hope (that kills me for some reason) I don't turn on the old charm like Leslie Nielson did in the first Naked Gun Movie. By the way, that scene is still one of my top 10 of all time for comedy scenes when he goes to the bathroom with the microphone after just making fun of the English government.
Sunday morning we had the kids playing and Hope doing her normal mouth vaccuuming when she started bleeding profusely through the mouth and trache hole. I immediately got the kids into our bedroom, got Hope calm and called 911. Hope's mom ran over (thank goodness she lives nearby) and we ran off to the ER. The kids never even saw the ambulance or Hope bleeding because I had them in our room with the door shut watching TV. They thought we just had an appointment. At the hospital, they did not want to mess with surgical repaired mouth/tongue so all they did was give her some pain meds, fill her mouth with gauze, and try to stop the bleeding. We had no idea what was wrong and neither did they. The amount of blood was unbelievable and I won't go into any more detail then that.
We got in touch with her surgery docs and they insisted she immediately be airlifted to Tampa so they could see what happened. So that put the local ER on alert that they were done with us except to keep the bleeding stopped. That meant we sat their for hours holding gauze up against her mouth as they "immediately" worked on the helicopter. Hope started passing out from the pain meds so I got to hold the gauze for a good part of the time. I could not leave the room easily to get updates so we sat and sat and sat. Finally we find out thunderstorms were keeping the helicopter grounded so we'd go by ambulance. Great, they would obviously have to have an ambulance around at the hospital, right? Right!?! Nope, that's a special transfer ambulance but we were assured it would be there in 30 minutes. Almost 2 hours later the EMT guys come strolling into our room so I asked what happened. I learned a long time ago not to immediately be upset because some times it was a delay for a heart attack or something more urgent. They just said nobody told us we should use the lights and sirens. I wanted to scream like any victim in any Friday the 13th movie (can you believe they actually made 13 of those movies). My personal favorite was the one with the girl scantily dressed heard a strange noise in the woods and then walks out to see what it was by herself calling out to her boyfriend after already hearing the stories about Jason and the fact that her boyfriend disappeared just minutes earlier. Oh that's right, that was all of them!
They finally take her by ambulance to TGH and I drive separately after running home to say goodbye again to the kids and pack some things still having no idea what was wrong with Hope. Saying goodbye to two sick kids crying for their mommy and asking me not to leave was one of the toughest things I've ever had to do. I stayed strong though and told them that Mommy would be fine without a tear (of course knowing nothing at that point except they thought it was bad enough to need a helicopter and the ER doc warned us she could bleed out, lose the artery, all sorts of other horrors "just so we were aware" of the dangers he said). We drove through horrific storms, sometimes going as slow as 30 MPH on the highway just to see enough to keep going. I was not stopping though. I figured I'd make it to the hospital driving or riding in the back of another ambulance if necessary. Well to make a long story short, the directions given were wrong, the storm made it impossible to see at times, I have to thank Man-Marie (no typo again Anna --- that's her endearing nickname) for helping me over the phone even though the maps she was looking at were not updated with the construction out here. It was kind of like that one episode on Three's Company when there was a misunderstanding, oh that's right that was all of them.
The hospital is freaking huge, kind of like the Pentagon except with better security. Later on when we were in ICU I told the nurse that this was the biggest ICU I had seen (and we've seen a bunch of them across Florida and even in SC) and she said this was only 1 of 10. This place is freaking huge! I finally make my way to the trauma room of the ER and they keep it 90 degrees because it's good for trauma patients. Well it's not good for poor Hope who had a 103 fever and they insisted on keeping covered up. So there we sat again for at least another hour or two, I started to lose track at this point. I told the nurse they wanted to fly her over but they drove instead of the weather. Couldn't the ambulance had let you guys know when they were getting close to get the doctor here when she arrived or soon thereafter??? One doc finally gets there but he doesn't want to do anything until another one arrives. By this time I'm losing it when I find the other doc is our original surgeon. You know if someone just told us that's what we were waiting for we would have understood. When Hope realized he was there she was so relieved. After all the drugs in her system she still beamed when she realized it was him.
He immediately went into her mouth and to his credit let me stay the whole time and watch. Hope gets freaked out a lot with all the drugs (see previous blog stories) so I can normally calm her down immediately. This way I get to find out what's up right away and provide input to what she had been given, eaten, and generally gone through over the last 24 hours. I won't go through the next process in detail as it was not fun but my favorite anectdote was as follows (after the fact of course):
- They kept asking Hope questions and she nodded yes at every one. I would continually correct when the answers weren't yes and then finally told them to quit asking her questions as she's been on morphine since 9 AM - that was approximately 6 PM. The surgery doc says, "she's absolutely drunk."
It turns out her flap came loose and she had an infection. They don't know what the infection is yet, but they think it was caused by her being with our kids because they were both sick. They both had 102 and 102.5 fevers on Saturday so I was taking care of 3 patients that day. The infection caused her to swell back up to her original size approximately so I've got my Peter Griffin back from Family Guy. If only I had the talking alcoholic dog too. Kurt is the closest thing I have to that (I put that in because Mikki said she loves when I make fun of Kurt). For the record, Kurt is NOW nothing like an alcoholic dog. I love horror movies (note the many references herein) and the recent run of Saw movies have been especially good to me. They're great to watch with the kids (I can hear HRS' phone ringing right now --- just kidding about the kids, I thought Ratatouille had too much violence for our kids). I think Hope was feeling like she's choosing between sawing off her leg with a hacksaw or just give up on using the tongue again like in the first Saw at this point. They let me stay with her until 1 AM, kicking me out occasionaly to do a CT scan, put in a central line and catheder, and a few other items. They knocked her out for the night with one more run of drugs and I left the hospital to find a hotel to crash. That's where the fun continued for me...
I was on empty when I got the hospital so I had to get gas right away. I got lost coming in and got lost again going out after one of the toughest days of my life. I luckily find a sign to get back to the freeway since I was lost, and I'm the only one on the road. And I mean the only one so it was a little like Children of the Corn for a bit when they first got to the town. I can't find a gas station anywhere and when I get back to the highway it only has a sign to take it north and I wanted to go south but I wasn't going to waste any gas or time at this point so I just jumped on. At the first exit going north I jumped off and nothing was open (this is 1 AM on a Sunday night mind you). I head southbound past the exit I just got off and was getting very nervous about running out of gas. The next exit I come too has a Texaco lit up so I was thrilled and rode fumes down to off-ramp.
I can only describe this inner city gas station as the worst place I've been in my life. I'm the only caucasian and the place is packed. I also had the only car in the lot newer then 1988. It appears this is the only place open for miles and they're actually more of a package store with a few gas pumps. Everyone around is drinking from brown bags and I literally could see at least a dozen homeless people within my general vicinity. To my surprise they had credit card at the gas pump, I'm not sure I would have even walked into this place if I had to. I was trying to act casual as I hurried to just get enough gas to get out of there and I could see guys starting to point and talk about me. I was sure a couple of them were starting to come towards me when my hero showed up.
A car full of drunk white kids dressed for the hood with music blaring, cursing, and making general jerks of themselves. I finished up and took off before anyone ever approached me. Maybe nothing would have happened but that's as nervous as I've ever been in a bad part of town in a long time. I had a couple of other previous encounters in Orlando but this blog is already too long. The exit if memory serves if no. 42 named Himes-Armenia, and if any of you know Tampa you know to stay away from this area. I told Man-Marie (my previous helper with directions earlier in the day and she just started laughing at the image of me there). All I could think of was Chevy Chase and the Griswald family in his station wagon talking to the gang bangers in Vacation.
Getting back on the highway was equally as scary, and once again I had to get on northbound but I was just happy to be back on a highway. After another U-turn the very next exit to the south was lit up like Clark Griswald's house in Chirstmas Vacation with gas stations open aplenty, strip clubs, bars, restaurants, and thank goodness some halfway decent hotels. I grabbed a bite and a brew at a Bennigan's and found a Comfort Inn to crash at. Welcome to south Tampa! Kurt I'll call you later today about which are the best strip clubs to hit while I'm here. Let me know who to ask for to get into the VIP room and if you still have a credit line so I don't have to carry cash in case I decide to go back the Texaco to pick up some liter beers for the road. Thanks.
Hope is now back in surgery but only getting her stomach tube installed and nose tube removed. As her surgeries goes this is nothing. She's still pretty drugged up with morphine, antibiotics, anti-anxiety, and a few other drugs so she's sleeping 99% of the time. We're hoping tomorrow she'll start being less dopey. Tomorrow we should know more too about how long we have to stay and what the next courses of action will be. Until now, we just wait out our 212 step setback, I picked that number becuase that's our ICU room number. Did I mention this place is freaking huge, much like my blog? Now you guys can feel like you were along for the ride.
Last but not least at all, yesterday was awesome for our family as Will and Anna added a new baby boy. All are fine after some complications and a lot of worrying during the pregnancy and they are still working on a name. Scarlett has a brother though now.
Friday, June 20, 2008
Home Sweet Home
We arrived home late this afternoon, after Hope lied to the docs as much as possible to get her realease papers. It kind of felt like a prison jail break, much like the Brady Bunch when they were trapped in jail during their trip out west. While Marsha and Greg made out (and Florence Henderson was apparently jealous), Papa Brady was able to in a Dukes of Hazzard style put enough shoe laces and if I remember right use Cindy's doll to drag the keys over to escape. We hit horrible weather and traffic on the way home, so we had to pull off the highway for Hope to clear her trache hole (yeah that's right, my wife has a trache hole) so she could continue breathing the rest of the way home. I mentioned previously her vacuum cleaner for the saliva in her mouth, while now we have a portable one. By the way, when she turns it on it sounds like a generator. It should be fantastic when she does it 87 times each night. I think I'll be sleeping about as well as Linda Blair in the Exorcist. By the way, I watched Hope look like her for 5 days in ICU only without the rotating head.
I have to admit I was and still am freaking out a bit about coming home so quickly and being responsible for her. The first thing she did was take a shower despite me begging for her to wait until tomorrow for the home health nurse to pop in. I was an absolute wreck the entire time she did it, but she did fine and of course felt a million times better. In Ghostbusters when they were slimed, Hope was in much worse condition after 8 days of torture and healing.
She's trying to sleep now, and I'm trying to catch up on my DVR recordings. All I've got is a couple of Law and Orders and Family Guys, what happened to TV while we were gone? I do appreciate the opportunity for my first ever blogs, it was like a trip down mammory lane (yes Anna, I did spell that one incorrectly on purpose and as she and many other probably noted I don't use spell check). I say mammory lane because most of the movies I really watched were sCinemax (another intentional typo) but fell back to Rocky and Karate Kid when Mom or Dennis walked in the room. That's also when Shadow jumped off the couch for the record. Shadow was our amazing dog that got blamed for every spilled drink or food for 10 years and we trained to sit on the couch but to jump off every time she heard Mom and Dennis' door or the front door open. I really meant that I was there with Kurt while he did such things as watch sCinemax and I was reading my scriptures and practicing my trache hole cleaning skills, just in case the need ever arose.
I told my same brother earlier today that Hope is talking some, although pretty quietly and it's not always easy to understand what she's saying. So I pick and choose what I can hear at my convenience. I love you comes in loud and clear (although I'm still waiting for that one), but can you clean the kitchen or put away the week plus worth of clothes for me is hard to understand. I'm still not winning any arguments, but it's cool to feel like I got in the last word for the first time ever.
We also had an incredible visit today from Stephanie, the woman that went through this same surgery recently that Hope talked to previously. We had a great visit, sharing all kinds of stories and offering great advice back and forth (she's going through radiation and chemo now for the first time). It was great to talk to another family that has gone through so many similar situations. I think Hope will be back blogging now, so I'll probably be signing off for a while. If you ever see a novel long blog, it's probably me jonesing to get some sarcasm out. Thank you all for the love and support, we can't wait to be normal again and are hoping Anna and then Kris will take over the family health news soon. We're ready for boring again, and make sure you visit us on Naked Tuesdays and cheer on the Red Sox.
- Just Jake.
I have to admit I was and still am freaking out a bit about coming home so quickly and being responsible for her. The first thing she did was take a shower despite me begging for her to wait until tomorrow for the home health nurse to pop in. I was an absolute wreck the entire time she did it, but she did fine and of course felt a million times better. In Ghostbusters when they were slimed, Hope was in much worse condition after 8 days of torture and healing.
She's trying to sleep now, and I'm trying to catch up on my DVR recordings. All I've got is a couple of Law and Orders and Family Guys, what happened to TV while we were gone? I do appreciate the opportunity for my first ever blogs, it was like a trip down mammory lane (yes Anna, I did spell that one incorrectly on purpose and as she and many other probably noted I don't use spell check). I say mammory lane because most of the movies I really watched were sCinemax (another intentional typo) but fell back to Rocky and Karate Kid when Mom or Dennis walked in the room. That's also when Shadow jumped off the couch for the record. Shadow was our amazing dog that got blamed for every spilled drink or food for 10 years and we trained to sit on the couch but to jump off every time she heard Mom and Dennis' door or the front door open. I really meant that I was there with Kurt while he did such things as watch sCinemax and I was reading my scriptures and practicing my trache hole cleaning skills, just in case the need ever arose.
I told my same brother earlier today that Hope is talking some, although pretty quietly and it's not always easy to understand what she's saying. So I pick and choose what I can hear at my convenience. I love you comes in loud and clear (although I'm still waiting for that one), but can you clean the kitchen or put away the week plus worth of clothes for me is hard to understand. I'm still not winning any arguments, but it's cool to feel like I got in the last word for the first time ever.
We also had an incredible visit today from Stephanie, the woman that went through this same surgery recently that Hope talked to previously. We had a great visit, sharing all kinds of stories and offering great advice back and forth (she's going through radiation and chemo now for the first time). It was great to talk to another family that has gone through so many similar situations. I think Hope will be back blogging now, so I'll probably be signing off for a while. If you ever see a novel long blog, it's probably me jonesing to get some sarcasm out. Thank you all for the love and support, we can't wait to be normal again and are hoping Anna and then Kris will take over the family health news soon. We're ready for boring again, and make sure you visit us on Naked Tuesdays and cheer on the Red Sox.
- Just Jake.
Thursday, June 19, 2008
Best News Yet
Yes that's right, they are making a Knight Rider full length motion picture and it's about time after two Hulk's and a Duke's of Hazzard (both also Friday night classics in my day --- yes Erin my day was a long time ago and you probably never heard of these shows). The bad news is that Hoff (David Hasselhoff's nickname for those that are also officers in the fan club have come to know him) from Knight Rider, Baywatch, and of course singing fame (German's love that guy --- a regular schtick for Norm McDonald in his SNL days at the news desk) is not going to be the lead. That leaves an incredible opportunity for a lesser star like Al Pacino, Robert DeNiro, Tom Cruise, or someone more with his body like Will Ferrell to dawn the black leather Member's Only jacket for some good ol' catch the bad guys with a great fist fight and arm behind the back walk him off to the police with your car doing all the work similar to the new Volkswagen commercial (see the German connection don't ya?). One last Hoff reference, I'll never forget the interview with him the day after the OJ chase and also the same night as an NBA Finals game between the Knicks and Spurs where he blamed the fact that his singing debut on pay-per-view failed miserably because of the OJ chase. Right Hoff, nobody tuned into a pay-per-view that most folks buy weeks ahead of time just in case OJ might jump in his Bronco for an unexpected cruise down the Santa Monica freeway.
Back to the more important information, Hope is thrilled with the NBA champoinship for the Celtics, the Red Sox coming back to win 2 of 3 from the Phillies in Philadelphia, FSU winning its third straight track championship, her trache was removed, she's keeping all of her food down without nausea, she's pooping and peeing without a catheder, she's talking a bit, we have a shot at going home sooner then Monday, the boys are great, and most importantly that I was gone most of the day because I had to run back to Melbourne (6.5 hours round-trip today, got to love I-4) so Hope got a break from me and you guys with my posts (I see everyone was thrilled as was I that Hope blogged). She's doing great, she's moves at glacial speed, but so does Reese every time I ask him to get dressed. I can't really blame him though, who doesn't love naked time??? In the tradition of Joey on Friends, we have naked Tuesday at the house but somehow cannot get any visitors. Must be a busy night for you guys.
Speaking of Joey, I was stuck in the hotel room one morning working before I could get into ICU and I saw a movie with him as a baseball player with a monkey. Wasn't that done already with Clint Eastwood (see my previous e-mail about Clint, nobody was willing to tell him he could not have a part even though he's not funny and his co-star was a monkey)? Is post-Friends that bad, or please tell me he didn't choose that roll while doing Friends...
I mentioned Hope is peeing and pooping again without a catheder, that was brought on by her penguin walk and glacial speed to the bathroom last night as she ended up pooping all the way to the bathroom just in time to stop when she got to the pot. It's amazing what drugs to your body and how it reacts afterwards, as she felt it come on but could not wait long enough to get there.
Our good friend Rochelle and all other nurses, CNA's, techs, etc. that work at hospitals do not get paid enough. They came right in and cleaned it all up good as new within minutes. Rochelle, if we have the same problem at home I'm calling you. Mine is limited to 3 boys' bums, that's it. Those of you without kids may think this is inappropriate, but those with know that poop talk is daily. In fact every time we say wee-wee, or poo-poo, or anything like it Reese points out right away that we are using potty talk and that we can only do that in the bathroom. So now Reese will sometimes going into the bathroom, not to potty mind you, but to stand there and say penis or bum. It's so cute we can't get mad. For you future and new parents out there, think through before you make any rash decisions on house rules such as when it's okay to use potty words.
One other quick anectdote, I was with Natedog once in Carrabba's and he had to go poop. So we talked our way all the way through it from making sure every inch of the seat was covered with T-paper, to discussing him not falling in, how he held his shirt up even though I promised no poop would get on it if he didn't, to how big the poop was when it came out, his joy afterwards including a woo-hoo similar to my Celtics woo-hoo's except with a cuter voice, how well I did cleaning his bum including a compliment from him, washing his hands with soap first (his idea) before water, and then finally leaving the handicap stall. Two guys were standing by the exit door when we walked out laughing hysterically as they had probably finished their business anywhere from a minute to 5 minutes earlier, but just stayed to listen to our conversation. At least we were in the men's room (that time --- but that's a story for another day).
Welp, there's even an outside chance we can break out of here as soon as tomorrow (like the previously referenced Duke's did from Hazzard County Jail on almost every episode, but my personal favorite was the ones with Daisy --- that's it, just the ones with Daisy). How Roscoe, his dog Flash who moves almost as fast as Hope to the potty last night (ooh I'm in trouble with Reese as I'm not in the potty room), Cletus and Boss Hogg always left those keys out and napped just close enough for the shoe laces or belt buckle (pick your episode, yep they actually did both on different epsiodes) I'll never understand. At least they always arrested a country music star at the end of each episode to sing at the Boar's Head before they all had their unison belly laughs at a dumb joke. Man, they just don't make them like they used to. Much like Rocky V, the season with the replacement cousin Duke's does not exist in my world either. And for those of you that saw the reunion movie, it's just a shame we all have to get old (but Hope will tell you I'm in complete denial about me aging, I can still do everything I did when I was 20 just not as long or often, and I'm talking about sports Jamie).
I'm honestly not sure I'm ready to take care of her at home without the full back-up of 400,000 sf of medical professionals one button-push away. She's dying to go home, but still is slow getting around, struggles breathing due to the constant saliva build-up in her mouth because she's not swallowing yet like the rest of us, has a hole in her neck, and still has trouble getting comfortable. Over the 10 minutes of typing I've done so far on this blog I've gotten up about 8 times to try and help her. She did poop while I was typing (sorry Reese) and about 2 minutes ago complained (it's cool she can complain again, don't get me wrong) that she was so tired but could not get comfortable enough to sleep. So I had her sit up in the bed, turned one light on, gave her her Obama Mama book she's been reading, and then went and sat down at the computer. The first time I looked up before I even started typing again she was out cold, never even opened the book. So I turned off the light and she's fast asleep. Good thing too, it's 9:45 PM and I haven't run out for dinner yet. Anyway, I'm excited she think's she's ready to go home but I'm very nervous about doing it. We'll see how tomorrow goes, but man we miss those boys. No matter what I'll be home on Saturday morning for Natedog's b-ball game to defend his playing and my coaching all time undefeated streak.
We just found out today my sister in CA who's having her first baby is having a girl. She's already decided on Bella Luna, absolutely a beautiful name. I have a subdivision project I worked on with the exact same name so when she gets older I'll tell her I named it after her. Nobody better bust me out on the timing so I'll be a cool uncle. I've already blown being cool with my kids, Kurt and Scott's kids, and everyone else that knows me so at least give me this one thing. By the way, if anyone wants to name their kid Sandy Pointe, Crystal Lakes or Stewart/Lake Washington Townhomes I'll name a project after them too. Nevermind, if it's a girl named Crystal Lakes she'd probably just end up being a stripper.
We received a comment yesterday that blew us away from our blogs. A woman at Moffitt was researching young women with cancer and kids and came across Hope's blog. She is here at Moffitt now but I could not respond to her comment. Anyway she said that she reads every post religously and that our blogs help her get through her day. I'm sure she's doing even better now that Hope has blogged but that really made us both feel good. We do this for our therapy and your knowledge, but it's awesome to help a complete stranger going through the same thing at the same time. I hope we get to meet Lynn or contact her directly one day.
One last comment to answer a few of your questions. I do actually think the way I write (scary I know), I don't look up any of this stuff online except for DB Sweeney's character's name in the Cutting Edge (by the way, how did that movie never get a sequel when they're making Knight Rider the movie?) as I just remember useless information like nobody's business but have trouble with the kid's birthdates, and I type most of these in about 10 minutes. Hope absolutely loves all the comments you guys make so keep them coming, I always read them to her or like today when I was gone she was checking them during the day. You can always tell my blogs from hers due to length, but she'll be back adding pics of our boys from our house really soon and we all look forward to that. Got to run, haven't checked the latest at Hoff's fan club website. It's cool he and I (and that's it by the way) have a place we can chat.
Back to the more important information, Hope is thrilled with the NBA champoinship for the Celtics, the Red Sox coming back to win 2 of 3 from the Phillies in Philadelphia, FSU winning its third straight track championship, her trache was removed, she's keeping all of her food down without nausea, she's pooping and peeing without a catheder, she's talking a bit, we have a shot at going home sooner then Monday, the boys are great, and most importantly that I was gone most of the day because I had to run back to Melbourne (6.5 hours round-trip today, got to love I-4) so Hope got a break from me and you guys with my posts (I see everyone was thrilled as was I that Hope blogged). She's doing great, she's moves at glacial speed, but so does Reese every time I ask him to get dressed. I can't really blame him though, who doesn't love naked time??? In the tradition of Joey on Friends, we have naked Tuesday at the house but somehow cannot get any visitors. Must be a busy night for you guys.
Speaking of Joey, I was stuck in the hotel room one morning working before I could get into ICU and I saw a movie with him as a baseball player with a monkey. Wasn't that done already with Clint Eastwood (see my previous e-mail about Clint, nobody was willing to tell him he could not have a part even though he's not funny and his co-star was a monkey)? Is post-Friends that bad, or please tell me he didn't choose that roll while doing Friends...
I mentioned Hope is peeing and pooping again without a catheder, that was brought on by her penguin walk and glacial speed to the bathroom last night as she ended up pooping all the way to the bathroom just in time to stop when she got to the pot. It's amazing what drugs to your body and how it reacts afterwards, as she felt it come on but could not wait long enough to get there.
Our good friend Rochelle and all other nurses, CNA's, techs, etc. that work at hospitals do not get paid enough. They came right in and cleaned it all up good as new within minutes. Rochelle, if we have the same problem at home I'm calling you. Mine is limited to 3 boys' bums, that's it. Those of you without kids may think this is inappropriate, but those with know that poop talk is daily. In fact every time we say wee-wee, or poo-poo, or anything like it Reese points out right away that we are using potty talk and that we can only do that in the bathroom. So now Reese will sometimes going into the bathroom, not to potty mind you, but to stand there and say penis or bum. It's so cute we can't get mad. For you future and new parents out there, think through before you make any rash decisions on house rules such as when it's okay to use potty words.
One other quick anectdote, I was with Natedog once in Carrabba's and he had to go poop. So we talked our way all the way through it from making sure every inch of the seat was covered with T-paper, to discussing him not falling in, how he held his shirt up even though I promised no poop would get on it if he didn't, to how big the poop was when it came out, his joy afterwards including a woo-hoo similar to my Celtics woo-hoo's except with a cuter voice, how well I did cleaning his bum including a compliment from him, washing his hands with soap first (his idea) before water, and then finally leaving the handicap stall. Two guys were standing by the exit door when we walked out laughing hysterically as they had probably finished their business anywhere from a minute to 5 minutes earlier, but just stayed to listen to our conversation. At least we were in the men's room (that time --- but that's a story for another day).
Welp, there's even an outside chance we can break out of here as soon as tomorrow (like the previously referenced Duke's did from Hazzard County Jail on almost every episode, but my personal favorite was the ones with Daisy --- that's it, just the ones with Daisy). How Roscoe, his dog Flash who moves almost as fast as Hope to the potty last night (ooh I'm in trouble with Reese as I'm not in the potty room), Cletus and Boss Hogg always left those keys out and napped just close enough for the shoe laces or belt buckle (pick your episode, yep they actually did both on different epsiodes) I'll never understand. At least they always arrested a country music star at the end of each episode to sing at the Boar's Head before they all had their unison belly laughs at a dumb joke. Man, they just don't make them like they used to. Much like Rocky V, the season with the replacement cousin Duke's does not exist in my world either. And for those of you that saw the reunion movie, it's just a shame we all have to get old (but Hope will tell you I'm in complete denial about me aging, I can still do everything I did when I was 20 just not as long or often, and I'm talking about sports Jamie).
I'm honestly not sure I'm ready to take care of her at home without the full back-up of 400,000 sf of medical professionals one button-push away. She's dying to go home, but still is slow getting around, struggles breathing due to the constant saliva build-up in her mouth because she's not swallowing yet like the rest of us, has a hole in her neck, and still has trouble getting comfortable. Over the 10 minutes of typing I've done so far on this blog I've gotten up about 8 times to try and help her. She did poop while I was typing (sorry Reese) and about 2 minutes ago complained (it's cool she can complain again, don't get me wrong) that she was so tired but could not get comfortable enough to sleep. So I had her sit up in the bed, turned one light on, gave her her Obama Mama book she's been reading, and then went and sat down at the computer. The first time I looked up before I even started typing again she was out cold, never even opened the book. So I turned off the light and she's fast asleep. Good thing too, it's 9:45 PM and I haven't run out for dinner yet. Anyway, I'm excited she think's she's ready to go home but I'm very nervous about doing it. We'll see how tomorrow goes, but man we miss those boys. No matter what I'll be home on Saturday morning for Natedog's b-ball game to defend his playing and my coaching all time undefeated streak.
We just found out today my sister in CA who's having her first baby is having a girl. She's already decided on Bella Luna, absolutely a beautiful name. I have a subdivision project I worked on with the exact same name so when she gets older I'll tell her I named it after her. Nobody better bust me out on the timing so I'll be a cool uncle. I've already blown being cool with my kids, Kurt and Scott's kids, and everyone else that knows me so at least give me this one thing. By the way, if anyone wants to name their kid Sandy Pointe, Crystal Lakes or Stewart/Lake Washington Townhomes I'll name a project after them too. Nevermind, if it's a girl named Crystal Lakes she'd probably just end up being a stripper.
We received a comment yesterday that blew us away from our blogs. A woman at Moffitt was researching young women with cancer and kids and came across Hope's blog. She is here at Moffitt now but I could not respond to her comment. Anyway she said that she reads every post religously and that our blogs help her get through her day. I'm sure she's doing even better now that Hope has blogged but that really made us both feel good. We do this for our therapy and your knowledge, but it's awesome to help a complete stranger going through the same thing at the same time. I hope we get to meet Lynn or contact her directly one day.
One last comment to answer a few of your questions. I do actually think the way I write (scary I know), I don't look up any of this stuff online except for DB Sweeney's character's name in the Cutting Edge (by the way, how did that movie never get a sequel when they're making Knight Rider the movie?) as I just remember useless information like nobody's business but have trouble with the kid's birthdates, and I type most of these in about 10 minutes. Hope absolutely loves all the comments you guys make so keep them coming, I always read them to her or like today when I was gone she was checking them during the day. You can always tell my blogs from hers due to length, but she'll be back adding pics of our boys from our house really soon and we all look forward to that. Got to run, haven't checked the latest at Hoff's fan club website. It's cool he and I (and that's it by the way) have a place we can chat.
Trache out
I just had my trache removed. Pretty simple and it is so much better. I felt really old having that plastic thing hanging out of my neck. Reminded me of my days working at the ENT office and wondering how people handled them.
And there is a possibility I'll go home tomorrow. I'm eating (through a tube) now and that was the only major hold up. Wish me luck.
And there is a possibility I'll go home tomorrow. I'm eating (through a tube) now and that was the only major hold up. Wish me luck.
Tim Russert and Pending Poop
I go in for some surgery and wake up to find one of my all time favorite reportsers passed away, Tim Russert. I thought I was devistated when David Bloom died a few years ago. So sad.
I'm sure Jake will post the poop story later today. Even though he wasn't here, I think my text to him eplained it all. I hope he leaves me with some dignity and leaves you with a laugh.
I'm sure Jake will post the poop story later today. Even though he wasn't here, I think my text to him eplained it all. I hope he leaves me with some dignity and leaves you with a laugh.
Wednesday, June 18, 2008
Hi YA'LL
It's me, the real Hope back at blogging and connected to the world. Jake just sat down and read me all his post and comments. From what I can remember he was right. I'm in dire need of a shower, hopefully that will come in a day or so, better head movement, some teeth brushing and some food! I did sneak off and shave my legs this morning. It wasn't really the potty break I needed. I need a major hair removal job and I was determined to get it done! A moment of vanity.
The doctor just came in and I'm talking! He asked me to cover my trachea and it worked! He switched it out again and now it's just cap and that will likely come out before I leave. I can manage a feeding tube in my nose, but the trachea thing is freaky!
I have some weird dreams I'll have to share, but have to save up some energy! Kisses and love to everyone including my two sweet boys.
The doctor just came in and I'm talking! He asked me to cover my trachea and it worked! He switched it out again and now it's just cap and that will likely come out before I leave. I can manage a feeding tube in my nose, but the trachea thing is freaky!
I have some weird dreams I'll have to share, but have to save up some energy! Kisses and love to everyone including my two sweet boys.
Only Hope
Only my Hope can do these kinds of things. To step back a moment please see my blog yesterday that Hope for the first time yesterday sat upright, then got up, then took about 3 baby steps to an adjacent chair doing a penguin walk. Because she was doing so well and a big trauma was coming in (I hope it was more because of the first one) they moved us late yesterday into a real room. It was late and all we did was get settled in before I ran out to grab some food before the big game (woo-hoo! sorry those will probably keep slipping out while I write this thinking about last night's game). Hope asked me to stay in her room which I couldn't do in ICU and I asked are you sure? Not that I didn't want to but she knew the game was last night. She said yes and that she would simply sleep while I watched the game.
That last about 4 minutes into the game before she gave me the heave-ho. It took 4 minutes because I was cursing our TV for the first three minutes because it was in Spanish. If you've never watched an NBA game in Spanish, this is what it's like (and it took 3 years of high school Spanish for me to understand this much):
jflkasjflagialhgiuofahy Garnett fjla;jflidsajfkl;ajklfdj Kobe jifoajdlk;fajl championes de mundo afjkld;ajfkladjflkdasjklf Pierce fjkladsjflkasjfldjasl;f dos e cero jali;gujioauflajfdslkjnklasnm Rivers.
After that I got it back to English. So I ended up watching the game at Chili's via Hope's heave-ho with my new Laker friends that left before the game was even over (in hindsight they may not have liked me that much during the game). I was very complimentary on that one, and only one, good play they had last night. Woo-hoo! So I got back to the room late watching all the post-game stuff (woo-hoo again!) and fell asleep right away. They were good enough to give me a cot instead of sleeping on those painful chairs that sort of lay back. I have spent so many nights on those things and never slept well on one. You wake up like a pretzel feeling like Rocky at the beginning of Rocky V in the locker room, just shaking and you can't believe what just happened to your body. For the record, that was actually a reference to Rocky IV because the fight was from that movie and because Rocky V in my world (and you guys should come try to visit my world some day --- instead of looking at things through rose-colored glasses I look through color blind glasses) never existed.
So I'm not sure what time it was, but if felt like 8 seconds after I laid down I wake up to suddenly Darth Vader falling onto the end of my cot. Turned out it was not Darth Vader at all, but Hope getting up herself, breathing heavily through her trach, unplugging the coat rack on wheels with all of her drugs, dragging the catheder and pee bag behind her, pulled out her IV, and was determined she needed to go to the bathroom. Now, she got up on the opposite side of her bed and then walked (and when I say walked this was her first time walking mind you) all the way around the bed and got to the end of my cot.
I immediately sprang up to help her and get her back in bed. Instead she pushed me away and somehow made her way into the bathroom unassisted. She tried to sit on the toilet, and becuase of the catheder and pee bag still dragging behind, she could not sit on it. She then started to walk into the shower where they had a portable toilet with handrails. She could not get into the shower so she then motioned for me to pull it out for her. By this point I lost it, and started to calmy say things similar to the Spanish I wrote above, what the f^*&(^^*^&*^*%$*%&^&*%^&*&*(& do you think you're doing!!! You could set yourself back days by falling and hurting any or multiple parts of your body. I calmy explained that she has a catheder and that she had to get back to bed. Of course she can't talk, but I think I literally saw a lightbulb go off in her head and I started to help her back to bed.
Apparently my calm demeanor may not have been as quiet through the wall and closed door to the room all the way to the nurses station about 20 paces away, because our 8.5 month pregnant nurse came running in and helped her back to bed. The uber big nurse (I know that's not polite but I was raised poorly and you would not believe how big she is --- please do not give her this blog address but the story is not complete without envisioning her running into the room) probably should not have been doing this type of thing in her condition, but she was a champ. I was so worked up after she spent about 5 seconds helping Hope, she asked if I was okay and offered me Hope's IV with the anit-anxiety drugs (I don't think she was kidding). If I was closer I probably would have poked a hole in the bag at the top of the coat rack and started drinking it like a keg stand. (Mom if you're reading this I have no idea what a keg stand is, I just said that to sound cool. No wait, I do know what a keg stand is but only because I followed Kurt to parties after I finished all my homework and bible verses to protect him as a big brother).
So if anyone doubted Hope's resolve to get something done when she puts her mind to it, don't ever do that. She's like Forrest Gump trying to shrimp when she puts her mind to something. I learned a long time ago when her mind is made up, back off or help. After I recovered from her ordeal, and I had to recover not her, the docs did come in and switch our her trach. She can now talk through it once her tongue is ready. I'm exhausted from recovering from her ordeal today so that's all I got for now.
A quick thanks to Hopes' dad for reminding me FSU just won their third straight track national championship (because we're a track school, not baseball, football, basketball, air hockey, paddleball, etc.) and to Jon Lester by throwing a shut out against the most potent offense in baseball in the Phillies so that the Red Sox and FSU are still winners restoring order to my universe. I've already got Nathan training for the prestigious air hockey scholarship at FSU so he can be a campus legend like I am. Nobody, and I mean nobody ever in the history of that campus was rejected more often then me by women those first two years I was up there and Hope was still in Melbourne. When she does get better and reads this, somebody please show me how to edit these blog things. Only Hope, and she's on her way to a full recovery.
That last about 4 minutes into the game before she gave me the heave-ho. It took 4 minutes because I was cursing our TV for the first three minutes because it was in Spanish. If you've never watched an NBA game in Spanish, this is what it's like (and it took 3 years of high school Spanish for me to understand this much):
jflkasjflagialhgiuofahy Garnett fjla;jflidsajfkl;ajklfdj Kobe jifoajdlk;fajl championes de mundo afjkld;ajfkladjflkdasjklf Pierce fjkladsjflkasjfldjasl;f dos e cero jali;gujioauflajfdslkjnklasnm Rivers.
After that I got it back to English. So I ended up watching the game at Chili's via Hope's heave-ho with my new Laker friends that left before the game was even over (in hindsight they may not have liked me that much during the game). I was very complimentary on that one, and only one, good play they had last night. Woo-hoo! So I got back to the room late watching all the post-game stuff (woo-hoo again!) and fell asleep right away. They were good enough to give me a cot instead of sleeping on those painful chairs that sort of lay back. I have spent so many nights on those things and never slept well on one. You wake up like a pretzel feeling like Rocky at the beginning of Rocky V in the locker room, just shaking and you can't believe what just happened to your body. For the record, that was actually a reference to Rocky IV because the fight was from that movie and because Rocky V in my world (and you guys should come try to visit my world some day --- instead of looking at things through rose-colored glasses I look through color blind glasses) never existed.
So I'm not sure what time it was, but if felt like 8 seconds after I laid down I wake up to suddenly Darth Vader falling onto the end of my cot. Turned out it was not Darth Vader at all, but Hope getting up herself, breathing heavily through her trach, unplugging the coat rack on wheels with all of her drugs, dragging the catheder and pee bag behind her, pulled out her IV, and was determined she needed to go to the bathroom. Now, she got up on the opposite side of her bed and then walked (and when I say walked this was her first time walking mind you) all the way around the bed and got to the end of my cot.
I immediately sprang up to help her and get her back in bed. Instead she pushed me away and somehow made her way into the bathroom unassisted. She tried to sit on the toilet, and becuase of the catheder and pee bag still dragging behind, she could not sit on it. She then started to walk into the shower where they had a portable toilet with handrails. She could not get into the shower so she then motioned for me to pull it out for her. By this point I lost it, and started to calmy say things similar to the Spanish I wrote above, what the f^*&(^^*^&*^*%$*%&^&*%^&*&*(& do you think you're doing!!! You could set yourself back days by falling and hurting any or multiple parts of your body. I calmy explained that she has a catheder and that she had to get back to bed. Of course she can't talk, but I think I literally saw a lightbulb go off in her head and I started to help her back to bed.
Apparently my calm demeanor may not have been as quiet through the wall and closed door to the room all the way to the nurses station about 20 paces away, because our 8.5 month pregnant nurse came running in and helped her back to bed. The uber big nurse (I know that's not polite but I was raised poorly and you would not believe how big she is --- please do not give her this blog address but the story is not complete without envisioning her running into the room) probably should not have been doing this type of thing in her condition, but she was a champ. I was so worked up after she spent about 5 seconds helping Hope, she asked if I was okay and offered me Hope's IV with the anit-anxiety drugs (I don't think she was kidding). If I was closer I probably would have poked a hole in the bag at the top of the coat rack and started drinking it like a keg stand. (Mom if you're reading this I have no idea what a keg stand is, I just said that to sound cool. No wait, I do know what a keg stand is but only because I followed Kurt to parties after I finished all my homework and bible verses to protect him as a big brother).
So if anyone doubted Hope's resolve to get something done when she puts her mind to it, don't ever do that. She's like Forrest Gump trying to shrimp when she puts her mind to something. I learned a long time ago when her mind is made up, back off or help. After I recovered from her ordeal, and I had to recover not her, the docs did come in and switch our her trach. She can now talk through it once her tongue is ready. I'm exhausted from recovering from her ordeal today so that's all I got for now.
A quick thanks to Hopes' dad for reminding me FSU just won their third straight track national championship (because we're a track school, not baseball, football, basketball, air hockey, paddleball, etc.) and to Jon Lester by throwing a shut out against the most potent offense in baseball in the Phillies so that the Red Sox and FSU are still winners restoring order to my universe. I've already got Nathan training for the prestigious air hockey scholarship at FSU so he can be a campus legend like I am. Nobody, and I mean nobody ever in the history of that campus was rejected more often then me by women those first two years I was up there and Hope was still in Melbourne. When she does get better and reads this, somebody please show me how to edit these blog things. Only Hope, and she's on her way to a full recovery.
Monday, June 16, 2008
Monday Smonday, Terrific Tuesday
We had a heck of a rough day, but some light at the end of the tunnel. Hope unfortunately was not doing well most of Sunday and Monday, vomiting throughout. It was the toughest time so far for me, and I'm sure she was feeling just a bit worse then I was. I mentioned before the vomiting is especially bad for her recovery. By the end of Monday when her main surgeon came by around 5:30 PM, he had had enough. He took her off the respirator, changed her pain meds so that she now does not have a constant drip and now has a button she can push herself when she needs more meds instead of all the time. Overnight she got sick again but only once. This morning they moved her to be vertical for the first time. While she feels nauseous, she has not thrown up this morning. I'm sure some of the nausea is do to being vertical for the first time in 5 days. She has had no problems breathing since being off the respirator which is great.
He also said despite her other tough symptoms, her surgery was looking good. Her unbelievable neck and leg scars were doing well, and she can start moving her head around a bit now too for the first time. I think all of the improvements I had anticipated would happen on Monday will happen today. She is starting to remember some things so I think the change in meds is sobering her up. Instead of Dazed and Confused high I think she's now Strange Brew drunk. She does not wake up confused anymore or scared.
She now has control of her own pain med for about the last 15 hours and has only pressed the buttom three times (according to her) overnight. That means the pain from the surgical areas is not too bad right now. Over the last 3 days every time I tell her something she doesn't remember, and most of the time when I tried to talk to her she didn't want me to talk at all. Even when it was about our kids, she just couldn't concentrate and listen or understand I think. Thank goodness for me I've had special training through my teen years on how to handle rejection from women (well not training as much as experience).
This is going to be very disjointed because things keep happening today. They just had the occupational and physcial therapists here and that went great. She sat up for the first time, stood up, and took a few baby steps before she sat down in a chair. She's in the chair now with much wires now, so instead of looking like she's in a bowl of spaghetti she's more like a hammock. One of the docs also came by and said they'll replace her trach probably later today. They'll give her a smaller one that when her tongue is ready she'll be able to talk through. We may end up going home with the trach.
Her bowels are still not working correctly, probably due to the extensive vomiting. Now that has hopefully stopped, they're hoping with time they will fix themselves. They took an X-ray to see how things look down there, but no report back yet. Until that clears up they still can't use the feeding tube, but that's really our only set back right now. They are even talking about looking for a regular room for us to move into later today or tomorrow. She is still swollen, kind of looks like Peter Griffin on Family Guy but with time hers will go away.
Speaking of Family Guy, with the exception of maybe the Office is there a finer comedy on TV? I don't get to watch much anymore with our crazy schedules, but what could be better then a drunk uncaring dad, talking dog in love with his master's wife, monkey that lives in the kid's closet, pedophile old man that whistles when he talks, sex-starved neighbor, always pregnant but never has any kids other neighbor with a husband in a wheel chair, kids that are dumb as a brick, one is probably a girl but you're never quite sure, and the youngest wants to kill his mom and take over the world. If that's not great comedy I don't know what is anymore.
Now most of your are probably wondering even more about how I'm handling the Celtics game 4 loss, FSU's elimination from the College World Series, and the Red Sox loss to the Phillies yesterday. Well the Celts, they had another almost amazing comeback but in the end decided to give their fans what they deserve by winning at home in Boston tonight. The Red Sox wanted to give the Phillies some confidence, and give everyone else a glimmering hope before they run away with the season. As for FSU, even having the best player in the country with Buster Posey was not enough. We seems to always make the Series but always choke it away. We had two runners on base, down by two in the 9th and couldn't pull the trigger. We tied an NCAA record for the most runners left on base in one game. The Celts will bring it home tonight and I'll be bringing Hope home before you know it. Thanks to all of you, and please do leave us comments if you're reading this because I appreciate them and I know Hope will want to see all of this when she's up to it.
He also said despite her other tough symptoms, her surgery was looking good. Her unbelievable neck and leg scars were doing well, and she can start moving her head around a bit now too for the first time. I think all of the improvements I had anticipated would happen on Monday will happen today. She is starting to remember some things so I think the change in meds is sobering her up. Instead of Dazed and Confused high I think she's now Strange Brew drunk. She does not wake up confused anymore or scared.
She now has control of her own pain med for about the last 15 hours and has only pressed the buttom three times (according to her) overnight. That means the pain from the surgical areas is not too bad right now. Over the last 3 days every time I tell her something she doesn't remember, and most of the time when I tried to talk to her she didn't want me to talk at all. Even when it was about our kids, she just couldn't concentrate and listen or understand I think. Thank goodness for me I've had special training through my teen years on how to handle rejection from women (well not training as much as experience).
This is going to be very disjointed because things keep happening today. They just had the occupational and physcial therapists here and that went great. She sat up for the first time, stood up, and took a few baby steps before she sat down in a chair. She's in the chair now with much wires now, so instead of looking like she's in a bowl of spaghetti she's more like a hammock. One of the docs also came by and said they'll replace her trach probably later today. They'll give her a smaller one that when her tongue is ready she'll be able to talk through. We may end up going home with the trach.
Her bowels are still not working correctly, probably due to the extensive vomiting. Now that has hopefully stopped, they're hoping with time they will fix themselves. They took an X-ray to see how things look down there, but no report back yet. Until that clears up they still can't use the feeding tube, but that's really our only set back right now. They are even talking about looking for a regular room for us to move into later today or tomorrow. She is still swollen, kind of looks like Peter Griffin on Family Guy but with time hers will go away.
Speaking of Family Guy, with the exception of maybe the Office is there a finer comedy on TV? I don't get to watch much anymore with our crazy schedules, but what could be better then a drunk uncaring dad, talking dog in love with his master's wife, monkey that lives in the kid's closet, pedophile old man that whistles when he talks, sex-starved neighbor, always pregnant but never has any kids other neighbor with a husband in a wheel chair, kids that are dumb as a brick, one is probably a girl but you're never quite sure, and the youngest wants to kill his mom and take over the world. If that's not great comedy I don't know what is anymore.
Now most of your are probably wondering even more about how I'm handling the Celtics game 4 loss, FSU's elimination from the College World Series, and the Red Sox loss to the Phillies yesterday. Well the Celts, they had another almost amazing comeback but in the end decided to give their fans what they deserve by winning at home in Boston tonight. The Red Sox wanted to give the Phillies some confidence, and give everyone else a glimmering hope before they run away with the season. As for FSU, even having the best player in the country with Buster Posey was not enough. We seems to always make the Series but always choke it away. We had two runners on base, down by two in the 9th and couldn't pull the trigger. We tied an NCAA record for the most runners left on base in one game. The Celts will bring it home tonight and I'll be bringing Hope home before you know it. Thanks to all of you, and please do leave us comments if you're reading this because I appreciate them and I know Hope will want to see all of this when she's up to it.
Not just another manic Monday, this is no fun day
As Mondays go, they generally are not most of ours favorite day of the week. Most of us just had two days off and have to go back to work. We had hoped today would be Hope's best day of recovery yet getting off the respirator, starting to wake up some more, better communication, the works. Unfortunately today she has not improved much, although time is always on our side (i.e. the more time passes the more she heals). She unfortunately threw up again around lunch time and this time it was right after a tube feeding. That tells us her body is not accepting the nutrition it needs in her stomach still, and of course throwing up does not help her surgical area (mouth and tongue). So they have decided to keep her on the respirator still and keep her giving her anti-nausea medicine which knocks her out. They did take the restraints off which she absolutely hated (they had previously taken them off when I was here) so that's a good sign. I watch her occasionally scratch her nose or something like that which she previously could not even do.
She is getting nutrition through her IV, so there's no risk with her not taking to the feeding tube yet. She still has very little to no memory of any of this which is good. I think she'll stay in ICU longer and just keep sleeping it off and healing with time. Every time I try to talk to her she gets upset, so I just sit here in silence reading, typing, working, and basically doing my thing. Like the Bangles careers, I'm signing off.
She is getting nutrition through her IV, so there's no risk with her not taking to the feeding tube yet. She still has very little to no memory of any of this which is good. I think she'll stay in ICU longer and just keep sleeping it off and healing with time. Every time I try to talk to her she gets upset, so I just sit here in silence reading, typing, working, and basically doing my thing. Like the Bangles careers, I'm signing off.
Sunday, June 15, 2008
Work, the Red Sox, and what's her name...
The rest of Sunday has been better, with a few minor exceptions. I have got more work done today then all of the other days here combined. You know those long rectangular rolling tables that can adjust to almost any height? Well, it works great too for rolling it up to a chair and spreading out your work along with a steady stream of Diet Cokes to keep you awake. I can't lay out full size drawings but I can review almost everything else I brought with me. Over lunch I went back at the hotel room to:
a. catch up on the Red Sox game which I only knew was on because they kicked me out to the waiting room from ICU at one point today (more of that foreshadowing thing I mentioned in a previous blog) and I just sat there nervously flipping channels while a family behind me all wept together (I kind of felt like a jerk, but what else can you do because you have to sit by the waiting room phone for them to call you back again???). In hindsight maybe I should not have yelled with joy and then did a victory lap (okay 4 victory laps) around the waiting room when Ellsbury scored in the first knowing somehow that was going to be enough for Beckett.
b. eat some lunch. I can't do the cafeteria here too often, it brings me back to freshman year at FSU when every meal was in their cafeteria and you can only eat fiestadas so many times. What's a fiestada anyway, it looks like pizza but has no sauce and a mystery meat on it?
c. get some work done where I can lay out full size drawings and watch the red sox game while I ate. That's the triple combo for me, productivity including sports, food, and when I run out of other things to amuse me get some work done.
Back to what's her name. The Red Sox, that's my girlfriend I'm in love with at the moment. They were up 9-0 behind Beckett and 5 dingers with both Manny and Big Papi sitting out against a promising young Reds team. I love my girl, now let's just hope the Celts bring it home tonight!
Hope by the way, was not feeling too hot when she woke up late morning. She was nautious again and threw up. Now that doesn't feel good anytime, but when you're not supposed to move your head, haveg a trach, swelling, and who's know what inside her mouth at this time it's tough to watch. They eventually made me leave the room and had the doctor examine how she was doing. No damage done, just an unbelievable scary time for her and a mess to clean up. They had to roll her over which takes 4 to 5 people to keep everything in line and not move her head much. In the end though, I think they found the right combo of happy place cocktails for her because since then she's done nothing but sleep with no nausea to speak of. Some of the contact I have had with her I wrote about on previous blogs with the hand squeezing has not happened again since yesterday. She can tell me what's wrong with some prodding when she wakes up, but otherwise is non-responsive and just wants to sleep. I think it's great, sleep and heal, sleep and heal, sleep and heal.
Another thing I just realized this morning while stewing in the waiting room, at that time we were basically only 40 hours from rolling her into ICU from surgery. I think all that's happened in such a short period of time has me thinking she should be further along. She's actually doing great (except for the nausea) when I think back to what the docs told us. She'll probably stay like this through Monday which is not a bad thing at all. I guess the short periods of good communication got my Hope (I kill me when I do that) up too high. She should just be sleeping and barely conscious to forgo feeling like her body probably does right now. I would think without the drugs being run over by a truck or Teddy Bruschi would feel better then what her body has been through. I think I was expecting too much because of early short moments of good stuff. They also put her back on the ventilator, but only as a pre-caution. She breathed on her own for at least two hours by my count.
I do feel like any moment she's going to wake up, pull a Talia Shire by grabbing my hand, I'll ask if there's anything I can do for her, and she'll say WIN! Just WIN! Then the music starts, bomp bompa bomp bompa bomp bomp bomp, bomp bompa bomp bompa bomp bomp bomp (that's my first ever attempt at writing out music, my cousins Keith & Brad are now going to be sick at the attempt). Then Mick will get up from his half drunk, half comatose slumped over sleeping in the chair for two weeks body, and say in his best thick NY accent grisly voice, "then whatta we waitin' for!" I just got goose bumps thinking about Rocky then going out and beating Apollo Creed by 1 second. Ultimately Rocky got his revenge from losing in Rocky I if you ever saw Action Jackson. That was a train wreck before it started. Like Rocky, the Sox and the Celts, Hope is on her way to be champion of Cancer...again for the last time.
a. catch up on the Red Sox game which I only knew was on because they kicked me out to the waiting room from ICU at one point today (more of that foreshadowing thing I mentioned in a previous blog) and I just sat there nervously flipping channels while a family behind me all wept together (I kind of felt like a jerk, but what else can you do because you have to sit by the waiting room phone for them to call you back again???). In hindsight maybe I should not have yelled with joy and then did a victory lap (okay 4 victory laps) around the waiting room when Ellsbury scored in the first knowing somehow that was going to be enough for Beckett.
b. eat some lunch. I can't do the cafeteria here too often, it brings me back to freshman year at FSU when every meal was in their cafeteria and you can only eat fiestadas so many times. What's a fiestada anyway, it looks like pizza but has no sauce and a mystery meat on it?
c. get some work done where I can lay out full size drawings and watch the red sox game while I ate. That's the triple combo for me, productivity including sports, food, and when I run out of other things to amuse me get some work done.
Back to what's her name. The Red Sox, that's my girlfriend I'm in love with at the moment. They were up 9-0 behind Beckett and 5 dingers with both Manny and Big Papi sitting out against a promising young Reds team. I love my girl, now let's just hope the Celts bring it home tonight!
Hope by the way, was not feeling too hot when she woke up late morning. She was nautious again and threw up. Now that doesn't feel good anytime, but when you're not supposed to move your head, haveg a trach, swelling, and who's know what inside her mouth at this time it's tough to watch. They eventually made me leave the room and had the doctor examine how she was doing. No damage done, just an unbelievable scary time for her and a mess to clean up. They had to roll her over which takes 4 to 5 people to keep everything in line and not move her head much. In the end though, I think they found the right combo of happy place cocktails for her because since then she's done nothing but sleep with no nausea to speak of. Some of the contact I have had with her I wrote about on previous blogs with the hand squeezing has not happened again since yesterday. She can tell me what's wrong with some prodding when she wakes up, but otherwise is non-responsive and just wants to sleep. I think it's great, sleep and heal, sleep and heal, sleep and heal.
Another thing I just realized this morning while stewing in the waiting room, at that time we were basically only 40 hours from rolling her into ICU from surgery. I think all that's happened in such a short period of time has me thinking she should be further along. She's actually doing great (except for the nausea) when I think back to what the docs told us. She'll probably stay like this through Monday which is not a bad thing at all. I guess the short periods of good communication got my Hope (I kill me when I do that) up too high. She should just be sleeping and barely conscious to forgo feeling like her body probably does right now. I would think without the drugs being run over by a truck or Teddy Bruschi would feel better then what her body has been through. I think I was expecting too much because of early short moments of good stuff. They also put her back on the ventilator, but only as a pre-caution. She breathed on her own for at least two hours by my count.
I do feel like any moment she's going to wake up, pull a Talia Shire by grabbing my hand, I'll ask if there's anything I can do for her, and she'll say WIN! Just WIN! Then the music starts, bomp bompa bomp bompa bomp bomp bomp, bomp bompa bomp bompa bomp bomp bomp (that's my first ever attempt at writing out music, my cousins Keith & Brad are now going to be sick at the attempt). Then Mick will get up from his half drunk, half comatose slumped over sleeping in the chair for two weeks body, and say in his best thick NY accent grisly voice, "then whatta we waitin' for!" I just got goose bumps thinking about Rocky then going out and beating Apollo Creed by 1 second. Ultimately Rocky got his revenge from losing in Rocky I if you ever saw Action Jackson. That was a train wreck before it started. Like Rocky, the Sox and the Celts, Hope is on her way to be champion of Cancer...again for the last time.
Sweet Sunday
Sunday morning now and Hope had a good overnight, she threw up a little but nothing too bad. They just cleaned her up and she's resting hard. I've already seen one of her docs, and because of yesterday they pretty much said they'll keep her on the breathing machine today and not mess with her happy place meds much. I don't think she will remember anything from yesterday, one of her meds is almost like amnesia. The more I learn about this stuff the more I want some for me!!! I think before she's back on her feet I may have to go back and edit these blogs. I'll write something like miracle day 2, 3, 4, etc. Kind of like how Pony Boy does on the Outsiders, just keep dreaming and seeing those sunsets.
I know her heartbeat will be racing tonight, after all it's game 5 of the Celtics/Lakers with a chance for the Celts to clinch. Whew, I needed a hit of the breathing machine just thinking about within one year the Red Sox win it all, the Pats get to the championship undefeated but unfortunately lose on the flukiest of all plays while David Tyree (yes the David Tyree of 4th string receiver fame) catches a duck thrown by the new evil Manning brother (it's no longer Peyton in my book, well until next season) who some how clumsily stumbles out of the Pats D-line grasp on third and impossible while Tyree holds onto the ball with one hand behind his helmet (just so you know I and all of New England will never get over that play --- similar to the setback in when Doug Dorsey (by far D.B. Sweeney's finest film) in the Cutting Edge gets blasted in his last hockey game and has to take up figure skating with Kate (I think that was Moira Kelly's only movie) the snobby skating princess. Hope makes fun of me all the time and I look forward to her dong that again soon because I still tear up for that damn movie for some reason and watch it every time I come across it. Don't worry, my Rocky man fetish doesn't go over to D.B. Sweeney. Now the Celtics have a chance to do what the Cutting Edge has done, make me cry with all the glory of 3 championship Boston teams.
I feel much better about Hope today, I think it will be a day of rest and more recovery. In my opinion, keep her knocked out for a few more days and let her wake up out of this bad dream with most of her functions. Thank goodness I don't think she'll remember the events to date. Thanks Roo for the advice about hospitals on the weekends, you definitely made me feel better about yesterday. It was, to steal one of my all-time favorite movie lines from Clint Eastwood in Heartbreak Ridge, a "clusterfuck." By the way, it must be great having such an incredibly successful movie career as Clint playing the exact same character in 185 movies, and you can't even hear what he says. I think with a name like Clint though, who's going to tell you that you didn't get the part?
Speaking of crying, don't get me started on Million Dollar Baby or I'll be spraying my lap top. One last thought about Stitch Jones in Heartbreak Ridge, how Mario Van Peebles didn't go on to a better career after watching him sing, fight, shoot, and then use his credit card to save the US Marines with a long distance phone call I'll never understand. It's probably the same thing that kept me from making the junior high school basketball team in 7th grade, politics of the game. Not that I hold a grudge or anything. Today is going to be a sweet Sunday...
I know her heartbeat will be racing tonight, after all it's game 5 of the Celtics/Lakers with a chance for the Celts to clinch. Whew, I needed a hit of the breathing machine just thinking about within one year the Red Sox win it all, the Pats get to the championship undefeated but unfortunately lose on the flukiest of all plays while David Tyree (yes the David Tyree of 4th string receiver fame) catches a duck thrown by the new evil Manning brother (it's no longer Peyton in my book, well until next season) who some how clumsily stumbles out of the Pats D-line grasp on third and impossible while Tyree holds onto the ball with one hand behind his helmet (just so you know I and all of New England will never get over that play --- similar to the setback in when Doug Dorsey (by far D.B. Sweeney's finest film) in the Cutting Edge gets blasted in his last hockey game and has to take up figure skating with Kate (I think that was Moira Kelly's only movie) the snobby skating princess. Hope makes fun of me all the time and I look forward to her dong that again soon because I still tear up for that damn movie for some reason and watch it every time I come across it. Don't worry, my Rocky man fetish doesn't go over to D.B. Sweeney. Now the Celtics have a chance to do what the Cutting Edge has done, make me cry with all the glory of 3 championship Boston teams.
I feel much better about Hope today, I think it will be a day of rest and more recovery. In my opinion, keep her knocked out for a few more days and let her wake up out of this bad dream with most of her functions. Thank goodness I don't think she'll remember the events to date. Thanks Roo for the advice about hospitals on the weekends, you definitely made me feel better about yesterday. It was, to steal one of my all-time favorite movie lines from Clint Eastwood in Heartbreak Ridge, a "clusterfuck." By the way, it must be great having such an incredibly successful movie career as Clint playing the exact same character in 185 movies, and you can't even hear what he says. I think with a name like Clint though, who's going to tell you that you didn't get the part?
Speaking of crying, don't get me started on Million Dollar Baby or I'll be spraying my lap top. One last thought about Stitch Jones in Heartbreak Ridge, how Mario Van Peebles didn't go on to a better career after watching him sing, fight, shoot, and then use his credit card to save the US Marines with a long distance phone call I'll never understand. It's probably the same thing that kept me from making the junior high school basketball team in 7th grade, politics of the game. Not that I hold a grudge or anything. Today is going to be a sweet Sunday...
Saturday, June 14, 2008
Rollercoaster Saturday
Saturday was an up and down day. Hope woke up at 1:30 AM (late Friday night basically) all confused, looking for me, scared, and agitated. The docs had decided to ease up off some of her happy place meds and it backfired. They had to quickly settle her back down and did so. You always love the 1:30 AM phone call from the hospital. Normally when I get that phone call it's Dennis just finishing up a gig at the VFW wanting to get some grub and at their drink prices I'm always happy to oblige. This is the only place I know you can drink yourself into a coma and still get change back from your $20 bill, including tip. Saturday morning was Nathan's first ever basketball game and I'm coaching the team. Hope and I had agreed I'd go back home for this and then come back later today. The docs told me they would not decrease her meds again today and just let her sleep it off so I shouldn't miss anything (I mention this as foreshadowing in case you didn't notice).
While I was back in Melbourne (about 2.5 hours away) they took her off the ventilator that goes through her trach and she was breathing on her own. They tried this twice before for a total of 25 minutes but she couldn't sustain her own breathing. Today she could for a while, an excellent progression. When I heard this I think it was the same great feeling 45-year old Ralph Macchio while playing a 16-year old, finally catching the fly in his chopsticks. That reminds me, I love sushi but don't get it much because Hope is just now becoming a fan. Anyway, while they are catching flies with chopsticks I've perfected stabbing the california roll so I can eat them like a skewer (just like my brothers in homeland China). One last thought while I'm dragging this out for everyone not reading this, if you can put a hot dog and fry it on a stick why aren't there more meals on sticks? I think I'm going to open a restaurant with nothing but foods on sticks. Do you think you could sue for a splinter on your tongue while trying to eat spaghetti?
Well, someone did not get the memo so they eased up on some of her happy place meds again today. Same thing happened, she woke up, dazed and confused, upset, scared, and this time started to really get angry. She's in restraints whenever I'm not here so she can't hurt herself and she can now write a bit to tell us what she wants. Well, her heartbeat started going through the roof, she stopped breathing on her own, started coughing, was crying, was mean to the nurses (those of you that know Hope and if you're reading this you probably know Hope would never be mean to anyone in her right mind), and she was squeezing a stuffed bunny rabbit thinking it was the nurses hand trying to communicate like she had with me (one squeeze for yes, two for no). I was still on the road back to Tampa when all of this occurred and they called me twice while I was driving. I think I set a new land speed record for I-4 and I apologize to any of you on the road at the same time.
By the time I got here she was back on the ventilator, crying, coughing, and basically miserable. She calmed down some, wrote that she was confused, thought she might have been dreaming, and then tried to say sorry by writing to the nurse and just started crying and coughing more, her heartbeat went really high again, and finally they had to knock her back out and put her back on the ventillator. I think she felt so guilty for being mean and then realizing she was squeezing the rabbit that was what upset her at this point. She's sleeping right now, peaceful and more like my Hope that loves to sleep. I watched them vaccuum her mouth, and clean out her trach. That's something you don't soon forget! Hope's 3rd favorite activity is vaccuuming (kids and Oprah are ahead, I'm some place back in the mid-fifties just ahead of cleaning out the dryer lint catcher) so I think that probably felt good for her afterwards. She's always told me she likes the lines in the carpet after vaccuuming, so I was imagining lines in her mouth. For a clean freak, I think it's cool I'm ranked ahead of at least something cleaning.
Of course I felt horribly guilty for not being back here when she was upset. I never would have left if I thought they were going to do this. I've asked and they promised me this time they would not do it again until tomorrow morning and they even put on her chart to do it after 8:30 AM because that's the earliest they'll let me in. Now I finally understand how Patrick Swayze felt in Roadhouse when he brought in his best friend to help him clean up the Double Deuce only to have his friend killed by the rich millionaire next door neighbor. Of course the bartender skimming off the top was the millionaire's nephew, not a good way to make friends when you fire him after the first day on the job. You can't fake the kind of emotions Swayze displayed in that role.
Back to Nathan's game, he won his first ever basketball game today and loved every minute of it. In fact, we've got 7 kids on the team and all 7 loved it. They had so much fun they were all smiles jumping up and down afterwards. It was also my head coaching debut for basketball, I think after one practice I had the team running the perfect set offenses and were helping and switching on defense just like our walk-throughs. Since I only was allowed one 45-minute practice before the game, basically I started with "this is a basketball" and ended spending about 3 minutes about defense by saying "just keep your hands up and try to keep yourself between them and the basket." Brilliant defensive basketball minds like Bill Russell and me come up with these types of things. By the way, our best player by far is our only girl. The first (and only) practice so far she got there last and cried because she was the only girl. Her mom could not get her to come play with us so I went over and told her I thought she'd be our best player and I needed her help coaching these boys that had never played (she and one other boys are the only ones that had ever played before). They are both 7 while the rest are 6-year olds. Anyway, 9 more championships and I tie Red Auerbach for the all-time record with our all-star girl leading the way!
Rollercoast Saturday is ending in a thud. I site here typing this blog, I think kind of afraid to leave just in case something else happens. My hotel room is only about a mile away and they promised me they'd call if anything happens. Besides, it's 10:30 PM and dinner sure would be good right now. I think I'm as hungry as Calista Flockhart in...well anytime. Make sure your seatbelt is on this might be a bit of a bumpy ride. Keep those positive thoughts coming our way, I think Sunday (Father's Day) is going to be the day I get my best present ever, Hope starting to come back.
While I was back in Melbourne (about 2.5 hours away) they took her off the ventilator that goes through her trach and she was breathing on her own. They tried this twice before for a total of 25 minutes but she couldn't sustain her own breathing. Today she could for a while, an excellent progression. When I heard this I think it was the same great feeling 45-year old Ralph Macchio while playing a 16-year old, finally catching the fly in his chopsticks. That reminds me, I love sushi but don't get it much because Hope is just now becoming a fan. Anyway, while they are catching flies with chopsticks I've perfected stabbing the california roll so I can eat them like a skewer (just like my brothers in homeland China). One last thought while I'm dragging this out for everyone not reading this, if you can put a hot dog and fry it on a stick why aren't there more meals on sticks? I think I'm going to open a restaurant with nothing but foods on sticks. Do you think you could sue for a splinter on your tongue while trying to eat spaghetti?
Well, someone did not get the memo so they eased up on some of her happy place meds again today. Same thing happened, she woke up, dazed and confused, upset, scared, and this time started to really get angry. She's in restraints whenever I'm not here so she can't hurt herself and she can now write a bit to tell us what she wants. Well, her heartbeat started going through the roof, she stopped breathing on her own, started coughing, was crying, was mean to the nurses (those of you that know Hope and if you're reading this you probably know Hope would never be mean to anyone in her right mind), and she was squeezing a stuffed bunny rabbit thinking it was the nurses hand trying to communicate like she had with me (one squeeze for yes, two for no). I was still on the road back to Tampa when all of this occurred and they called me twice while I was driving. I think I set a new land speed record for I-4 and I apologize to any of you on the road at the same time.
By the time I got here she was back on the ventilator, crying, coughing, and basically miserable. She calmed down some, wrote that she was confused, thought she might have been dreaming, and then tried to say sorry by writing to the nurse and just started crying and coughing more, her heartbeat went really high again, and finally they had to knock her back out and put her back on the ventillator. I think she felt so guilty for being mean and then realizing she was squeezing the rabbit that was what upset her at this point. She's sleeping right now, peaceful and more like my Hope that loves to sleep. I watched them vaccuum her mouth, and clean out her trach. That's something you don't soon forget! Hope's 3rd favorite activity is vaccuuming (kids and Oprah are ahead, I'm some place back in the mid-fifties just ahead of cleaning out the dryer lint catcher) so I think that probably felt good for her afterwards. She's always told me she likes the lines in the carpet after vaccuuming, so I was imagining lines in her mouth. For a clean freak, I think it's cool I'm ranked ahead of at least something cleaning.
Of course I felt horribly guilty for not being back here when she was upset. I never would have left if I thought they were going to do this. I've asked and they promised me this time they would not do it again until tomorrow morning and they even put on her chart to do it after 8:30 AM because that's the earliest they'll let me in. Now I finally understand how Patrick Swayze felt in Roadhouse when he brought in his best friend to help him clean up the Double Deuce only to have his friend killed by the rich millionaire next door neighbor. Of course the bartender skimming off the top was the millionaire's nephew, not a good way to make friends when you fire him after the first day on the job. You can't fake the kind of emotions Swayze displayed in that role.
Back to Nathan's game, he won his first ever basketball game today and loved every minute of it. In fact, we've got 7 kids on the team and all 7 loved it. They had so much fun they were all smiles jumping up and down afterwards. It was also my head coaching debut for basketball, I think after one practice I had the team running the perfect set offenses and were helping and switching on defense just like our walk-throughs. Since I only was allowed one 45-minute practice before the game, basically I started with "this is a basketball" and ended spending about 3 minutes about defense by saying "just keep your hands up and try to keep yourself between them and the basket." Brilliant defensive basketball minds like Bill Russell and me come up with these types of things. By the way, our best player by far is our only girl. The first (and only) practice so far she got there last and cried because she was the only girl. Her mom could not get her to come play with us so I went over and told her I thought she'd be our best player and I needed her help coaching these boys that had never played (she and one other boys are the only ones that had ever played before). They are both 7 while the rest are 6-year olds. Anyway, 9 more championships and I tie Red Auerbach for the all-time record with our all-star girl leading the way!
Rollercoast Saturday is ending in a thud. I site here typing this blog, I think kind of afraid to leave just in case something else happens. My hotel room is only about a mile away and they promised me they'd call if anything happens. Besides, it's 10:30 PM and dinner sure would be good right now. I think I'm as hungry as Calista Flockhart in...well anytime. Make sure your seatbelt is on this might be a bit of a bumpy ride. Keep those positive thoughts coming our way, I think Sunday (Father's Day) is going to be the day I get my best present ever, Hope starting to come back.
Friday, June 13, 2008
Funky Friday
Hope is helping me with this blog. She is lazily laying down next to me, able to communicate by squeezing my hand with one squeeze for yes, and two for no. She also is able to write short notes, although Nathan's handwriting is better right now. We are calling this one funky Friday because Hope and I spent a bunch of time together last night and most of the morning, but she has no recollection. Which is cool, because all the dumb things I said in our mostly one-sided conversation I can now lie to her about and sound smart. If you read my first blog you can see that's how I trapped her over the years, in my David Koresh like style.
Hope is doing amazingly well, far ahead of what the docs told us. The main doctor performing the tongue surgery, Dr. E, is an absolute perfectionist according the ICU nurses and he's bragging about how well she is doing. They have taken her off the breathing maching for a total of 25 minutes so far, which is great that she is able to breath on her own some. They'll do more and more time off it until she's breathing on her own. It's great to have my own Darth Vader with me, although I think Hope is less evil then the good Darth. I'm using the force to help her heal, although I haven't been able to levitate her yet. I think that's because of the heavy blankets.
My mom has the boys over here, visiting with my brother that just happened to be in St. Pete this week on vacation with his family. Hope could not have planned this any better. We're not letting, nor would the hospital, the boys see Hope but it's great to have them nearby so I can go back and forth and not miss them so much. They are also able to give me extra hugs and kisses for mommy. They'll be leaving in the morning to go back to Melbourne for Nathan's first ever basketball game. I'm coaching the team so I'll be going back with them. My coaching style is like the Bad News Bears, I've got 7 kids, 5 that have never played, and they only let me have 1 45-minute practice before our first game. I also get drunk before and during the games, and mostly just curse at the kids because they're not playing better.
I'll be coming back Saturday afternoon to hang with the Hopester and show her pics from Natedog's game. I'll be staying in Tampa most of the rest of her time over here. That way I don't lose my mind control over her and keep her drinking the juice I've been giving her since I asked her to prom. It's worked this long, I just hope the hospital drugs don't let her realize what a big mistake she's been making. We thank everyone again for all the love and support, Hope's now in cruise control getting better by the minute. She's sleeping a lot of the time, which other then hanging with her boys and watching Oprah, it's her third favorite thing to do.
Hope is doing amazingly well, far ahead of what the docs told us. The main doctor performing the tongue surgery, Dr. E, is an absolute perfectionist according the ICU nurses and he's bragging about how well she is doing. They have taken her off the breathing maching for a total of 25 minutes so far, which is great that she is able to breath on her own some. They'll do more and more time off it until she's breathing on her own. It's great to have my own Darth Vader with me, although I think Hope is less evil then the good Darth. I'm using the force to help her heal, although I haven't been able to levitate her yet. I think that's because of the heavy blankets.
My mom has the boys over here, visiting with my brother that just happened to be in St. Pete this week on vacation with his family. Hope could not have planned this any better. We're not letting, nor would the hospital, the boys see Hope but it's great to have them nearby so I can go back and forth and not miss them so much. They are also able to give me extra hugs and kisses for mommy. They'll be leaving in the morning to go back to Melbourne for Nathan's first ever basketball game. I'm coaching the team so I'll be going back with them. My coaching style is like the Bad News Bears, I've got 7 kids, 5 that have never played, and they only let me have 1 45-minute practice before our first game. I also get drunk before and during the games, and mostly just curse at the kids because they're not playing better.
I'll be coming back Saturday afternoon to hang with the Hopester and show her pics from Natedog's game. I'll be staying in Tampa most of the rest of her time over here. That way I don't lose my mind control over her and keep her drinking the juice I've been giving her since I asked her to prom. It's worked this long, I just hope the hospital drugs don't let her realize what a big mistake she's been making. We thank everyone again for all the love and support, Hope's now in cruise control getting better by the minute. She's sleeping a lot of the time, which other then hanging with her boys and watching Oprah, it's her third favorite thing to do.
Thursday, June 12, 2008
Better Days Ahead
At hour 10 of her surgery they called from the OR and said that everything had gone well and they were beginning to close her up. I'm just waiting now for the doctor to come out and give me more details so please forgive me if I stop typing and talk to him. I promise I'll come back just as quick as I can. A few observations from my day:
1) They are pretty good at giving updates early on, but once the lunch hour hits I think they started thinking about their own tongues more then Hope's. Anyway, they did come out about 2 PM with an update to say things were still going well but then just me sweating here and listening to Sportscenter for the 11th time since I've arrived. Anyone want to know the high scorer of the WNBA game between Indiana and Utah, anyone???
2) The Starbucks lounge in the hospital I'm sure is great if you're a coffee drinker (I'm not), but if you want edible food your best bet are the sugar packs by the tea and juice machine.
3) No matter how hard I try, no one in the waiting room wants to play Twister. Want a bunch of lumps, they just stared at me in horror which reminded me of the looks I received asking girls out before I was able to lure Hope into my trap --- David Koresh like. I know you've all been wondering for years what she's been doing with me so the secret is finally out.
4) An alarm went off around 5 PM along with flashing lights across the hospital. Everyone just looked around wondering what to do. Then all of a sudden the candy striper jumps up and leaves the room. I started to worry at that point but decided I wasn' t leaving without Hope. In what seemed like and entire Oprah episode about her friend Gayle or secrets to providing your puppy a pedicure but was probably only about 2 minutes, they announced that Flabotomy on the first floor had something wrong.
5) No matter how many times you make or take a phone call in this hospital, you are guaranteed at minimum of two drops per conversation. It's amazing, you have to just guess where the reception will move like a splotlight you have no control over. It reminded me of the scene in Flash Gordon when Flash had to stick his hand into the unknown blob with holes in it in hopes of not being poisoned by a biting monster that I think is the ultimate reason I'm afraid of snakes.
I just got back from my doc talk. He said everything went well, but she's really, really, really, really swollen. He said he was surprised how much and that I will be when I can see her. He said it's a result of all the chemo and radiation she's been through. I asked him if it was Rocky 1 swollen after the Apollo fight and he said she's prettier. That made me feel better, although since no one is reading this I do have a strange Rocky fetish (except Rocky V which I still to this day refuse to allow to be part of the series) that I cannot explain.
Anyway, he said everything went well but they had to cut a much larger opening in her neck then they had hoped. The tip of her tongue is intact, so she should be able to speak in the near future. Every patient is different so whether it's a week or weeks in unknown. He thinks within a month she'll be speaking well and after 6 months it probably won't get any better if it's not back to normal. They'll keep her in ICU over the next 72 hours minimum, and may bring her back into surgery if necessary because of any complicantions or the tongue is too tight. When you use the leg instead of the arm it's less soft and flexible so that likelihood is higher. She'll be out cold a minimum of 24 more hours, but I can probably see her in the next 2 to 3 hours. She did get a tracheotomy to breath, will be fed through a tube for a 2 to 3 weeks in all likelihood, and will have trouble swallowing and speaking for a while. This is the diet plan she'd been waiting for.
They tested the outside edges of the dissection for cancer and it came back negative. Over the next few days they'll sample the entire specimen and let us know if they found any more. Since I now have a permanent imprint in this seat cushion, I think I'm going to try and move on. Better days are ahead, our boys will get their Mommy back and we will move on from this thing for the last time. Thanks to all the well-wishers and positive thoughts, I'll update again later as I learn more. Do you think they have a big screen TV and allow a six pack in ICU tonight to watch the Celtics take final control of the Finals???
1) They are pretty good at giving updates early on, but once the lunch hour hits I think they started thinking about their own tongues more then Hope's. Anyway, they did come out about 2 PM with an update to say things were still going well but then just me sweating here and listening to Sportscenter for the 11th time since I've arrived. Anyone want to know the high scorer of the WNBA game between Indiana and Utah, anyone???
2) The Starbucks lounge in the hospital I'm sure is great if you're a coffee drinker (I'm not), but if you want edible food your best bet are the sugar packs by the tea and juice machine.
3) No matter how hard I try, no one in the waiting room wants to play Twister. Want a bunch of lumps, they just stared at me in horror which reminded me of the looks I received asking girls out before I was able to lure Hope into my trap --- David Koresh like. I know you've all been wondering for years what she's been doing with me so the secret is finally out.
4) An alarm went off around 5 PM along with flashing lights across the hospital. Everyone just looked around wondering what to do. Then all of a sudden the candy striper jumps up and leaves the room. I started to worry at that point but decided I wasn' t leaving without Hope. In what seemed like and entire Oprah episode about her friend Gayle or secrets to providing your puppy a pedicure but was probably only about 2 minutes, they announced that Flabotomy on the first floor had something wrong.
5) No matter how many times you make or take a phone call in this hospital, you are guaranteed at minimum of two drops per conversation. It's amazing, you have to just guess where the reception will move like a splotlight you have no control over. It reminded me of the scene in Flash Gordon when Flash had to stick his hand into the unknown blob with holes in it in hopes of not being poisoned by a biting monster that I think is the ultimate reason I'm afraid of snakes.
I just got back from my doc talk. He said everything went well, but she's really, really, really, really swollen. He said he was surprised how much and that I will be when I can see her. He said it's a result of all the chemo and radiation she's been through. I asked him if it was Rocky 1 swollen after the Apollo fight and he said she's prettier. That made me feel better, although since no one is reading this I do have a strange Rocky fetish (except Rocky V which I still to this day refuse to allow to be part of the series) that I cannot explain.
Anyway, he said everything went well but they had to cut a much larger opening in her neck then they had hoped. The tip of her tongue is intact, so she should be able to speak in the near future. Every patient is different so whether it's a week or weeks in unknown. He thinks within a month she'll be speaking well and after 6 months it probably won't get any better if it's not back to normal. They'll keep her in ICU over the next 72 hours minimum, and may bring her back into surgery if necessary because of any complicantions or the tongue is too tight. When you use the leg instead of the arm it's less soft and flexible so that likelihood is higher. She'll be out cold a minimum of 24 more hours, but I can probably see her in the next 2 to 3 hours. She did get a tracheotomy to breath, will be fed through a tube for a 2 to 3 weeks in all likelihood, and will have trouble swallowing and speaking for a while. This is the diet plan she'd been waiting for.
They tested the outside edges of the dissection for cancer and it came back negative. Over the next few days they'll sample the entire specimen and let us know if they found any more. Since I now have a permanent imprint in this seat cushion, I think I'm going to try and move on. Better days are ahead, our boys will get their Mommy back and we will move on from this thing for the last time. Thanks to all the well-wishers and positive thoughts, I'll update again later as I learn more. Do you think they have a big screen TV and allow a six pack in ICU tonight to watch the Celtics take final control of the Finals???
A leg up
Hope made me promise to keep her blog going and since I have nothing else to do but work I thought I'd check in and do a Sports Guy style play by play (the Sports Guy is only the greatest, most unbiased Boston fan by the name of Bill Simmons of ESPN and Now I Can Die in Peace --- THE book about the Red Sox finally winning the World Series --- for those of you not familiar with his style) of the day's happenings.
Our morning started off just like every other, up at 2:30 AM, shower, put on your best Celtics T-shirt thinking about nothing but critical game 4 tonight, make a sandwich for the car ride, grab a Diet Coke for some caffeine, make sure your wife doesn't eat or drink anything while you flaunt yours, and then off to the day's adventures. Between 3 and 5 AM traffic was light (shocking I know) and while those that know me probably won't believe it, we arrived at Moffitt on time by 5:15. At registration we literally were rolling in our chairs laughing and had the registration lady rolling too as we couldn't even answer her simple questions. The roomful of nervous patients and families behind us must have thought we were crazy as we just laughed and laughed.
Do you have a living will, hope says "nope" and Jake says "yep." We discuss it and decide both of us are right and we did that with about 3 of her 5 questions. I think the pressure of the Celts game tonight had us off our game (it was probably Rondo's ankle that was really concerning Hope). Anyway off to pre-op where we had an amazing group of nurses and CNA's, some of the best we've experienced with her now tenth surgery. They could not find a vein on Hope, so they eventually drew blood from her foot with the ace of the hospital staff coming in like Pappelbon in the 9th to get her IV connected.
They could not get enough blood for any tests they needed so they decided it was good enough for the drugs and when she was in her happy place (that's what Hope and I call it for her because she doesn't drink and still only does legal drugs --- I'm working on that still --- so the only time she's loosey goosey is when the anesthesiologist hooks her up. Before one of her other surgeries a few years ago, after she was in her happy place she was working the room like a junior high schooler after their first two beers of their life (Mom if you're reading this, it's based only on what Kurt told me). When she found out that she knew the patient's doctor next to us, all she did was go on and on about him. When he showed up to talk to his patient, he could barely get a word into them because she kept telling him how much she loved him. Of course he didn't know who she was until he recognized me, so that's why we call it Hope's happy place. This kind of reminds me of Dustin from college, the I love you's and uncomfortable, long man-hugs start rolling towards the end of that first six-pack.
As they're about to roll her into surgery, the doc who we'd already talked to twice comes in and says they have a change in plans. He normally gets a one-page fax about the veins and blood flow in her arm where they're taking a vein to put in her tongue, but this time it was two pages and the second page just came through as it didn't previously. He goes on to tell us that her veins don't connect in the middle of her hand like most mortals (Hope is no mortal after everything she's been through) so if they operate like they planned she would lose use of her hand. We thought that was helpful information to have because they had to operate on her right hand since her left had 17 nodes removed in years past. By helpful what I really mean is, Holy Shit doc, check the top of the fax where it clues you in on page 1 of 2 or page 1 of 1!!! That may have been more in my head that what I actually said.
So I put down the scriptures I had been reading to Hope since I practically have them memorized anyway and handled it like any real man would, cried like Rocky did when Mick died in Rocky 2. To this day, no way Mr. T wins that first fight if the Mick doesn't get knocked down at the bottom of the staircase because Paulie just couldn't manage like the Mick. So while Hope's in her happy place but sobering up upon this news, we (and by we I mean I agreed with the doctor) decide to take the vein from her leg instead which is an easier recovery from surgery but the skin they get from her leg is less flexible then from her arm. That means that when they rebuild her tongue with the "flap" she'll have a harder time with speech therapy. We agree to proceed (I think Hope would have agreed to have her tongue sewed onto her nose to get back to her happy place at that point) with the leg surgery instead of the arm a couple of minutes before they wheel her off.
While I've been typing this short novel (nobody will read it anyway) the nurse came out to give me an update. She's now out of her happy place and out cold which is how she'll stay for anywhere from 48 to 72 hours. She'll likely be in ICU for 3 or more days and in the hosptial anywhere from 7 to 14 days (I just heard a cheer come up from my office with this news 2.5 hours away) since I won't be back for a while. Now all I have to decide is whether to get some work done or watch Saved by the Bell season 17 (thanks Jim Trauger for the DVD and I promise it won't be scratched or I'll replace it) --- the episodes when Kelly Kapowski started to really fill out, and unfortunately for Zack because he marries her in Vegas at the end of the season she filled out a little too much. But don't worry, Jesse goes onto Showgirls fame years later and Screech into Utube porn fame, so all's well for now with the Saved by the Bell class. Like the Celtics, Hope already has a leg up on her surgery today.
Our morning started off just like every other, up at 2:30 AM, shower, put on your best Celtics T-shirt thinking about nothing but critical game 4 tonight, make a sandwich for the car ride, grab a Diet Coke for some caffeine, make sure your wife doesn't eat or drink anything while you flaunt yours, and then off to the day's adventures. Between 3 and 5 AM traffic was light (shocking I know) and while those that know me probably won't believe it, we arrived at Moffitt on time by 5:15. At registration we literally were rolling in our chairs laughing and had the registration lady rolling too as we couldn't even answer her simple questions. The roomful of nervous patients and families behind us must have thought we were crazy as we just laughed and laughed.
Do you have a living will, hope says "nope" and Jake says "yep." We discuss it and decide both of us are right and we did that with about 3 of her 5 questions. I think the pressure of the Celts game tonight had us off our game (it was probably Rondo's ankle that was really concerning Hope). Anyway off to pre-op where we had an amazing group of nurses and CNA's, some of the best we've experienced with her now tenth surgery. They could not find a vein on Hope, so they eventually drew blood from her foot with the ace of the hospital staff coming in like Pappelbon in the 9th to get her IV connected.
They could not get enough blood for any tests they needed so they decided it was good enough for the drugs and when she was in her happy place (that's what Hope and I call it for her because she doesn't drink and still only does legal drugs --- I'm working on that still --- so the only time she's loosey goosey is when the anesthesiologist hooks her up. Before one of her other surgeries a few years ago, after she was in her happy place she was working the room like a junior high schooler after their first two beers of their life (Mom if you're reading this, it's based only on what Kurt told me). When she found out that she knew the patient's doctor next to us, all she did was go on and on about him. When he showed up to talk to his patient, he could barely get a word into them because she kept telling him how much she loved him. Of course he didn't know who she was until he recognized me, so that's why we call it Hope's happy place. This kind of reminds me of Dustin from college, the I love you's and uncomfortable, long man-hugs start rolling towards the end of that first six-pack.
As they're about to roll her into surgery, the doc who we'd already talked to twice comes in and says they have a change in plans. He normally gets a one-page fax about the veins and blood flow in her arm where they're taking a vein to put in her tongue, but this time it was two pages and the second page just came through as it didn't previously. He goes on to tell us that her veins don't connect in the middle of her hand like most mortals (Hope is no mortal after everything she's been through) so if they operate like they planned she would lose use of her hand. We thought that was helpful information to have because they had to operate on her right hand since her left had 17 nodes removed in years past. By helpful what I really mean is, Holy Shit doc, check the top of the fax where it clues you in on page 1 of 2 or page 1 of 1!!! That may have been more in my head that what I actually said.
So I put down the scriptures I had been reading to Hope since I practically have them memorized anyway and handled it like any real man would, cried like Rocky did when Mick died in Rocky 2. To this day, no way Mr. T wins that first fight if the Mick doesn't get knocked down at the bottom of the staircase because Paulie just couldn't manage like the Mick. So while Hope's in her happy place but sobering up upon this news, we (and by we I mean I agreed with the doctor) decide to take the vein from her leg instead which is an easier recovery from surgery but the skin they get from her leg is less flexible then from her arm. That means that when they rebuild her tongue with the "flap" she'll have a harder time with speech therapy. We agree to proceed (I think Hope would have agreed to have her tongue sewed onto her nose to get back to her happy place at that point) with the leg surgery instead of the arm a couple of minutes before they wheel her off.
While I've been typing this short novel (nobody will read it anyway) the nurse came out to give me an update. She's now out of her happy place and out cold which is how she'll stay for anywhere from 48 to 72 hours. She'll likely be in ICU for 3 or more days and in the hosptial anywhere from 7 to 14 days (I just heard a cheer come up from my office with this news 2.5 hours away) since I won't be back for a while. Now all I have to decide is whether to get some work done or watch Saved by the Bell season 17 (thanks Jim Trauger for the DVD and I promise it won't be scratched or I'll replace it) --- the episodes when Kelly Kapowski started to really fill out, and unfortunately for Zack because he marries her in Vegas at the end of the season she filled out a little too much. But don't worry, Jesse goes onto Showgirls fame years later and Screech into Utube porn fame, so all's well for now with the Saved by the Bell class. Like the Celtics, Hope already has a leg up on her surgery today.
Wednesday, June 11, 2008
Signing Off For A Bit
Tomorrow's the big day. I'm nervous, but looking forward to getting it over with. We have to be at the hospital at 5:15am, off to the OR by 7:15, surgery should start by 8:30 and I should be done by 5pm. From there, I sleep and sleep and sleep.
I spoke to Stephanie again last night. She's right in the middle of radiation and chemo and feeling like crap. She said the surgery was very easy compared to how she feels now. That's exactly what I thought last time so I'm hoping I agree with her this go round. She said they had her on so many meds that when she did wake up (they kept her in a coma for a week) she felt great. Her speech is perfect and she gives me hope.
Jake may keep my blog up while I'm out so be looking for him. He's a much better writer than I am so I hope you're not too sad when I'm back on-line. I'm sure he'll be entertaining!
Off to eat lots of fattening foods before my medically induced fast.
I spoke to Stephanie again last night. She's right in the middle of radiation and chemo and feeling like crap. She said the surgery was very easy compared to how she feels now. That's exactly what I thought last time so I'm hoping I agree with her this go round. She said they had her on so many meds that when she did wake up (they kept her in a coma for a week) she felt great. Her speech is perfect and she gives me hope.
Jake may keep my blog up while I'm out so be looking for him. He's a much better writer than I am so I hope you're not too sad when I'm back on-line. I'm sure he'll be entertaining!
Off to eat lots of fattening foods before my medically induced fast.
Tuesday, June 10, 2008
Trip to NYC
We are back from an amazing vacation in NYC. I'd love to give you a nice long blog with details about what we did, but I'll have to reduce it to some photo's.......I have to unpack, do laundry, repack and get ready to leave again tomorrow for my surgery...Argh.
Subway ride and Yankee's Game
We made it!
A few hours after we arrived we were walking to Madison Square Garden's when we saw some commotion at the New York Time's Building. Turns out some crazy guy was climbing the building! We watched the entire thing...he finally reached the top and was arrested.
Having some fun in Central Park.
FAO Schwartz
Statue of Liberty
Subway ride and Yankee's Game
Caricature in Rockefeller Center
Cab ride
Horse ride around Central Park. No, we aren't getting a ticket..just SPCA checking to make sure the horses are healthy.
Outside our hotel in Time's Square
And finally, a big breakfast before heading home
Tuesday, June 3, 2008
Homeless and Obama Mama
I NEVER give homeless people, hanging out roadside, money, but when I saw a young man and woman with a baby holding a sign that said, "Anything will help" I passed them money out my car window. I hope they don't buy drugs with it. I hope I wasn't a sucker.
****
****
I want this shirt!
Monday, June 2, 2008
Today and Tomorrow
Today, Jake and I were back over in Tampa for some more pre-op work. After my appointment we decided to walk over to Dr. A's office (about a block away from where we were) and see if we could meet with a nurse or P.A. to answer some additional questions we had. As we approached the back door of the building and entered, guess who was coming right at us? Dr. A. I have to say this must have been Devinne intervention because this is a HUGE medical complex with thousands of employees. What are the odds? We stopped to talk with him and he said he would be happy to speak with us and to meet him down in his office. Five minutes later we were in a conference room and he spent at least 20 minutes going over things with us. At my original appointment he had mentioned a 20 year old girl who had recently had the same surgery I'm about to have and had recovered beautifully. I asked if he would pass on my number to her because I thought it would be helpful to speak to someone who had gone through the surgery. By the time we arrived back home, Dr. A and Stephanie (the 20 year old) had both left messages.
I called Stephanie back and we had a nice conversation. She speaks beautifully. She has just started the same chemo and radiation I did three years ago so I answered her questions about that and she answered mine about he surgery. It's all still scary, but I feel so much better now.
******
Tomorrow my little Kindergartner turns into a 1st grader!
*****
After celebrating Kindergarten graduation I'll be glued to the TV, watching the final Democratic Primary results. GO OBAMA!
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