5/7- morning report

Jake's ornery and doesn't feel well. I was wondering how long it would take before we would get to the point where he hates all the staff and all medicines become a negotiation. Two days.



I think they may move us out of the ICU today and back to the pediatric floor. That wouldn't be bad, because the ICU keeps you attached to all sorts of monitors, and this would lessen the number of limbs that are restrained. They may also remove the catheter from his bladder, but then he'd need to get up to pee, and I don't know if he's ready to walk yet.



Jen looked good. She's on a lot of pain meds, so she sleeps a lot, but she's pretty sharp. Today was her first day back to the Soy Vanilla Latte fraternity.



The out-out-town grandparents are leaving town today, but my brother and Jen's other brother are coming in. Her parents will probably be with us for a few weeks. We rented them an apartment in the same complex where we have an apartment.



I have now watched Son of the Mask three times, as well as the entire Suite Life of Zack and Cody series. I've also gained several pounds, having eaten nothing but Krystal and Wendys. Sleeping in the chair twists me around too much to want to go running, and the bike isn't here yet, so I just sit and eat.

Overnight report

Jake is nauseated, but hopefully that will subside. I usually say nauseous, but then Jen corrects me and notes that word is a synonym for noxious. There was a scene in Animal House about that (sensual versus sensuous). OK, where was I?

A couple of cute moments so far.

1. He noted to Grandma that he wishes that there was school over the summer, so he could be missing it while he recuperates.

2. Pre-op, the surgeon asked whether he had eaten since midnight. He immediately confessed that he'd had a single sour skittle at 12:10a.m. because he was hungry.

3. He's kind of stuck in the bed with IV in both arms, so he needed some help scratching his tush. I helped him, and we agreed that I was his buttscratcher. (obscure reference)

I expect that he'll be woozy for a while, because he's on a pretty severe anti-rejection drug cocktail. The kidney function appears to be going well, but the rejection/anti-rejection battle hasn't started yet.

Momma is doing well. America's Next Top Model was on, so I didn't want to be third wheel.

5/6 - Wasn't kidding about the needle

Apparently a needle tip broke off when they were doing the kidney removal from Jen. Given that the procedure was mostly laproscopic, they decided that they would have to open her up too much in order to look for the needle (so they didn't). They say that it isn't like a lost sponge, because the needle tip won't lead to infection. We'll see.

P.S. - Chelsea choked, so I'm switching to plan B.

5/6 -afternoon update

Everybody is doing well. Jen stood up a little, and they wheeled her up to see Jake. Jake is still very groggy, so he missed most of it. His kidney function numbers are looking good, with some (but not all) of the indicators back down to normal kid levels. Since today would have been a dialysis day, that's very encouraging.

Jen's pain is high, but slowly coming down. She's eating solid food. They apparently lost a needle in her somewhere, but they told her that should be a problem. We're hanging out in her room watching the Chelsea/Barcelona game (1-0 Chelsea, on an early Essian goal). She's willing to tolerate it,because Oprah is the only other thing on adult TV. I'm lucky that it's on now, and not during American Idol or Dancing With the Stars. I'm going to switch rooms to sit with Jake, but the chances of him tolerating TV soccer are very, very low.

I went back to the apartment from 11 to 2 to take a nap on a real bed. The bike isn't here yet (maybe this weekend), so I actually did nap.

5/6 - morning report

Jake had a fairly good night, all things considered. He's hooked up to a number of IVs and pumps, so he's tied down and fairly uncomfortable. He can take some clear fluids now, and will be able to eat some simple solids once he proves that he can pass gas (the medical version of the canary in the coal mine?). He's still groggy (I presume there is a pain killer amongst the medications), but we're watching tv and hanging out. We're supposed to do some walking today. Two of the medicine bags on the IV stand are marked "high cost drug" with a big green sticker. I don't know if I should be impressed or intimidated.

Jen is in a lot of pain, but they moved her out of the bed to a chair so she can sit up. I don't know when they will have her walking. She had some tea, and presumably can eat some solids today.

I have a digital camera, and asked Jake if he wanted me to take a picture to send to his friends. He just glared at me. Just like his mom.

Post-surgery (Jen)

Jen is laid up and groggy. The intent was to do the entire kidney removal laparoscopicly, but they ended up having to partially open up her belly. That means that the recovery will take longer and be more painful. I think one of her parents will sleep in her room tonight. If not, I'll shuttle between the two patient rooms.

If you think my wife would allow me to take a camera-phone picture of her in this condition, you don't know my wife.

Post-surgery (Jake)

We're in the pediatric ICU - room 10-458T, phone 352-265-1004. He's groggy from the surgery, the anesthesia, and everything else, and he's floating in and out of awake.

He really wants water, but all he gets for now is an ice chip (singular) ever 15 minutes. He's got a bunch of IV tubs in him, but he's not intubated, and generally looks a lot better than when he was in the ICU 2 years ago.

They did an ultrasound in the room, so I saw the incision. It's almost a foot long, which is enormous on a little guy.

Momma is somewhere on the 9th floor, but I haven't been down there yet. All the grandparents are down there, because visitation is less restrictive than in the PICU.

Jake's out of surgery, and everything works

The transplant surgeon came down to the waiting area, and told us that Jake is out of the operating room, and that the kidney worked (at least on the urine front) as soon as they plugged it in. As soon as we download the firmware upgrade and the service packs, he'll be kicking butt. The hospital's financial services people are all over me on the extended warranty.

The surgeon also stopped by the recovery room to tell Jen, who is apparently groggy but happy.

They will bring him to the pediatric ICU in an hour or so. We'll spend a few days in the ICU and then get sent to a regular room (or home).

Jen is out of surgery

Jen is out of surgery. It was about four hours all-in. Getting the loaf out of the pan in one piece is always the hard part. She'll be in the recovery room for 2 hours, and then she goes to her hospital room. We don't get to see her in the recovery room.

They are now stuffing the kidney into Jake.

They just wheeled him in . . .

Mom had her kidney removed, but she hasn't left the operating room yet. Apparently the general surgeons take out the kidney from her left side and the transplant surgeons install it on his right side. I was hoping the transplant surgeon would bring the kidney out on a platter before transplant for us to see (like a live lobster at a steak restaurant).

The nurses just wheeled Jake in. They didn't let me go back with him, but he's such a stoic trooper that he doesn't appear to need me. We did the Obama fist bump, and then they wheeled him in. He didn't have any questions or concerns once the doctors promised that they wouldn't put in the IV until he's asleep. That's been his concern for days. Like an educated consumer, he knows the process and knows what he doesn't like.

The surgery is probably easier than my process of attempting how to put on Jake's surgical gown. It's a good thing I didn't have a stapler handy. It's a one-sided button-up tunic - like what the drummer in an 80's new wave band would wear (but with teddy bears on it). This picture was in pre-op 2 minutes before he went in. The iTouch (with the "bubble-pop" game) is a very useful pre-op device.

The overnight shift

Jen has to be ready at 6:00a.m. for her 8:00a.m. operation, and that is supposed to take an hour or so. Jake goes in at 9:00a.m. If I was a dedicated blogger (or if I was iCarly), I'd post footage of the operation. I ain't and I'm not.

Jake's blood pressure is pretty high. He's up late because they come in to monitor it every hour, which makes trying to go to sleep pointless. They told him he couldn't eat after midnight, so he guzzled a bottle of water and a pack of Sour Skittles at 11:59p.m. I downloaded the complete 4th season of Camp Lazlo for his iPod, so it should be a full and rich evening's entertainment.

Checked-in - contact info

Jake is now checked in to the hospital. The blurry photo is from the admissions waiting area (just like it says on the sign). He's got dialysis this afternoon, but right now he's playing video games on a laptop in his room. We're in room 10-458t on the pediatric ICU. The nurse station number is 352-265-1004, but it's better to call me on the cell at 305-915-5173 (and only if absolutely necessary). For the those who have spent a lot of time in a hospital room, the room phone is usually really loud and scares the heck out of you.

We are enduring the usual but inexplicable hospital delays. Jen had to fast for her final tests today. She's getting grumpy because she can't eat until the tests are finished, and the staff is apparently running way behind.

Jen will be in a different room after tomorrow's surgery, but will probably get wheeled in to say hello.

The wireless internet is strong with Shands -- the mark of a top-notch health care facility.

Getting ready for check-in tomorrow

Jen will drop me and Jake off at 8a.m. tomorrow for hospital admission, and will meet us later after she undergoes some final tests. Tomorrow is my first night in about a year on one of those foam chairs that folds flat(-ish) into something that works as a bed for people with no spine. Jake is packing his overnight bag full of Yu Gi Oh cards so he's ready to duel if the nurse is bent on world destruction.

We had dinner from the drive-through at Krystal. Sadly, this was my idea. At least I know what I'll be eating for the next week. I presume you all know that the Big Tex has been voted vending machine pastry of the year four years in a row. It's my hospital vending machine prime-time (i.e., 3:00a.m.) performer.

Setup in Gainesville

We've arrived at the 1 bedroom furnished apartment that we rented in the "Hunter's Crossing" apartment complex. We have a single queen bed, so I'll sleep on the floor in my sleeping bag for a few days. Once they go into the hospital, I'd get the whole bed for a week, but I'll be spending the night in Jake's room. Two weeks from now, we'll have a second apartment (a 2 bedroom), and we'll move into that and the in-laws will get this one. We're set up fairly well, with a supermarket close by and our own washer/dryer. I can't figure out how to get the cable modem to work, but there's no problem finding an unsecured "linksys" router for "free" wireless access.

The trip was uneventful. Jake plowed through half of Season 4 of the Simpsons and is working on Pokemon Platinum. He calls it "doubletasking." Jen and I listened to Casey Kasem running down an America's Top 40 from 1976. Disco Lady by Johnnie Taylor was number 1 that week.

This is graduation weekend for both University of Florida and Santa Fe Community College, so everything is fairly crowded. We stayed local for dinner, because I was told we absolutely, positively needed to be back for the premiere of the new Jonas Brothers tv show at 8p.m.

Both Jen and Jake have hospital appointments at 8:00a.m. on Monday morning, but Jen doesn't formally check in until Tuesday. Jake will have his last (hopefully) dialysis on Monday, and will sleep at the hospital Monday night (as will I). I have a lot of work to catch up with before the surgery, so tomorrow will be low-key.

5/1- Leaving tomorrow

We've leaving for Gainesville tomorrow morning. We recently bought a 2009 Honda Pilot with the flip down TV and wireless headphones, so Jake now likes long car trips because it allows for uninterrupted Yu Gi Oh. He received an iPod Nano, an iPod Touch, and new Nintendo DS games for his birthday (all from his friends), so he's fully self-contained (i.e., spoiled rotten) in the back seat.

We need to get to Gainesville by 5:00p.m. so we can get the keys to the aprtment before the rental office closes. Otherwise, it's the Super 8 for tomorrow night.

The whole family is coming to town by plane on Monday, and we're a little spooked by the swine flu possibilities. The no-hugging rule will have to go into effect.

Jacob's preemptive 9th birthday party

Since we'll be in Gainesville for his birthday (May 10), we had his birthday party this weekend. 25 kids at Le Choclatier - making chocolate-dipped confections and chocolate "painted" pops. He also had a going-away/birthday party in his classroom.

4/22- Two weeks until transplant

The transplant is scheduled for May 5 at Shands Hospital in Gainesville. Momma is giving Jake a kidney. We're expecting to spend most of the summer in Gainesville recuperating. We hope that Jake will spend just a week in the hospital. Jen may be out a little faster, but her procedure will also hurt more ('tis harder to give than receive).

If the kidney kicks in right away, we hope that he'll undergo minor surgery within a few weeks to remove his port catheter. We're told that it can sometimes take a few weeks for the transplanted kidney to start operation. He'll be keeping his two old kidneys for the time being. His existing kidneys do work for fluid collection, but they don't filter. The third kidney will get installed right in the middle, and will hopefully perform the filtration role. If the old kidneys continue to cause high blood pressure problems in the future, it's possible that they may get removed later on.

After Jen and Jake are released from the hospital, Jake will have post-surgery checkups every day for at least a month. At some point, the check-ups become farther apart. We probably won't move home until they are spaced a week apart. We've rented two adjoining corporate apartments for the summer - one for us and one for the inlaws. After the first month, Dad (me)will be in Miami M-F for work and will come back on weekends, while the in-laws are around during the week. I aspire to clean the junk out of the house (old toys, "heirlooms," etc.) while I'm home, but no guarantees.

Jake will be under quarantine most of the summer to avoid infection, and he won't be able to have visitors for at least six to eight weeks after the operation. After then, we'll need to play it by ear (masks, etc.), and make sure that visitors haven't been around sick people.

In the next weeks, I'm told that I need to configure the recuperation apartment with the basic essentials - Tivo, Playstation 3, Wii, and dual computer access. We'll be roughing it for sure.

2/25 - Off to Gainesville

No posts for a while - eh? We've transferred our "waiting list" time from University of Miami/Jackson Hospital to University of Florida/Shands Hospital in Gainesville. FYI - both of these hospitals are primarily affilaited with semi-pro football teams. There are allegedly medical schools at both facilities, but that appears to be a mere sideline to intercollegiate sports.

Shands appears to have a much more modern and user friendly (i.e., returning phone calls) pediatric transplant program. One other big change is that Shands encourages parents to donate a kidney, while UM discourages it. This week were going to Gainesville so Jen can be assessed as a potential kidney donor (She's a blood-type match, and I'm not). If she's a match, we may do the transplant in the next 45 days.

This weekend, we're going to Camp Boggy Creek, which is a camp for kids with medical issues. This is their Kidney and Cystic Fibrosis mixer weekend. My guess is that he goes for archery and fishing. It will be a nice break from Yu-Gi-Oh. On the other hand, I'm worried about whether Jen will enjoy cabin living.

Jake is otherwise doing very well. His brain is 100%. The kidney function is close to zero, which means that the dialysis sessions are taking longer, and are therefore more painful.

10/16 - No luck this time

Not a good match. Either too many freckles or not enough freckles. If we don't get a match soon, we get six free months of Match.com to find his soulmate.

10/15 - going in to kick the tires on a kidney

We're going in tonight to check out an available kidney for compatibility. We're hoping for one with built-in satellite radio. We'll keep you posted.