Sunday, May 31, 2009

5/31 Report

Creatinine is down to 1.9. Steroids seem to be working. I take full credit for the diagnosis and treatment. We'll leave at noon and need to return by 7:00a.m. tomorrow.

He was a little nauseated yesterday afternoon. It may be because of the steroids (Solumedrol).

I convinced him to watch part of Star Blazers with me last night. He said he didn't really like it, because he "only likes either funny cartoons or cartoons with some action and some funny", and this didn't have enough funny or action. The fact that it's 9 hours long also plays into his analysis. My new bribe is that if he's well behaved, I'll download a Phineas and Ferb episode from iTunes for his iTouch. When I was a kid, if you were well behaved your parents would beat you with a softer belt.

I went to Best Buy with money in hand to buy a laptop (I was even considering a MacBook). I couldn't get a salesperson's attention, and we left after 15 minutes. Who'd have thunk that people would be shopping on a Saturday afternoon? I think they could smell that I wasn't buying the Geek Squad add-in.

If things are good tomorrow, I'll drive back to Miami in the afternoon.
I forgot to mention - happy Shavout.

Saturday, May 30, 2009

5/30 report

Creatinine is still rising (2.24), and his prograf level is up. The nephrologist came by in the morning, and said that the MAG3 test showed that his kidney flow function had improved (from 28 minutes to drain the marker fluid 2 weeks ago to 22 minutes now). The transplant team then came, and conceded that the scans don't show any kind of impairment that would require surgical intervention. They prescribed a three day round of steroids (something we'd been suggesting all week) to treat what could be a subtle rejection. I raised a stink as to why he'd need to be admitted for three more days to allow for a 15 minute treatment once a day - especially where we've been sitting here for a week for little more than observation. After some negotiating and complaining (and with the assistance of a very able nurse), it was resolved that we will leave at 4pm each day and return at 7am. It was as pissy as I've even been at the docs.

He's lounging in the buff and proudly stinky. I plan on taking him to the comic book store later for a firm grounding in the classics. Other than that, no big plans. Maybe an afternoon bike ride and then a month of time sheets for the 2 hours a day of work I was able to do.

Friday, May 29, 2009

5/29 - Night

The nephrologist called and said that the Mag3 scan showed no functional impairment. We treat that as good news. The current problems would then be treated as rejection-related, and medicated via steroids. That sounds a lot better than something which would require invasive surgery. On the other hand - who the heck really knows. Its a mystery wrapped up in an enigma smothered with paradox and currants, and then deep-fried.

Onto other news. First, Batmite (voiced by Paul Reubens) was featured on tonight's Batman: The Brave and the Bold. Awesome! Lots of nerd in-jokes. He was portrayed a lot like Boingo the Bunny from Hoodwinked. Some of you may recall that when Jake first left the hospital two years ago, the first place we went was a comic book convention. I'm not that into it anymore, but he really does get it from me (although I was more Marvel than DC). I need to get him reading comic books rather than manga.

Second, once he goes to sleep I can start Star Blazers (a/k/a Spaceship Yamato) off of iTunes. Each episode is a 1gb download. It's a Japanese serial cartoon dubbed into English. It was on at 8:00 a.m. every morning when I was in the seventh grade. I faked sickness for two days in a row to see how it ended.

5/29 evening update - Still here

Creatinine is up to 2.14. We just came back from another Mag3 test in radiology. Same message from the docs - "you can go home tomorrow if nothing drastic changes". Same as last 3 days.

No common view as to why creatinine is rising. Surgery group wants to do surgery to treat a potential blockage. Nephrology wants to wait and see. Same as last 2 weeks.

He's in good sprits. We played some Wii, and he beat me fair and square (as opposed to Yu Gi Oh, where he cheats sometimes).


And sometimes they know what they are doing . . .

He woke up kind of grumpy and blah, and an bunch of anti-rejection medications on an empty stomach didn't help. He was moaning and bundled up in bed when the dog people came by with a ten month old Maltese puppy named JJ (who travels by turquoise purse). Jake perked right up, and has been playing with the dog for 15 minutes. I hadn't previously seen the dog visits work well, because they usually visit with big dogs (which doesn't interest Jake).

We don't have the test results back yet, so we don't know if we're going home today.

Thursday, May 28, 2009

5/28 Evening Report

We had two out-of-hospital excursions today. At lunchtime, we went to Toys-R-Us so he could use some of the gift cards that he'd received. They have plenty of Club Penguin stuff in stock, so he was pleased. We came back for the afternoon medical rounds, and then went back to the apartment and to dinner. We're now back in the hospital room for the evening.

If nothing bad happens, we'll be discharged tomorrow and spend the weekend in the apartment. He's been off IV for 24 hours, and we need to make sure that his levels stay stable. He's drinking the prescribed amount, so we'll see what happens. If everything according goes to plan, I'll drive back to Miami on Monday afternoon so I can do some office work, and then drive back here late Wednesday night or first thing Thursday morning.

We did learn during the afternoon meeting with the medical team that the lead transplant surgeon and I went to intermediate school together (I'm one year older). Good old I.S. 72 - Rocco Laurie Intermediate School in Staten Island (pictured above). Mascot is the Bulldogs. Official colors are pink and blue. Official automobile is the 1982 Chevy Monte Carlo.

5/28 Morning Report

Creatinine is up to 1.94, from 1.6 yesterday. Potassium is stable. In other words, he's pretty much the same as he was when he was discharged last week (although I presume they thought that the creatinine would decrease over the weekend).

No word on discharge plans. They've given us a pass to leave for a few hours, as long as we come back by rounds at 2:00p.m. We will either go to the Butterfly museum (if the weather is conducive) or to Walmart for a change of clothes. We didn't bring a lot of clothes (because he lounges au natural), so he's wearing his Transformers (Bumblebee) pajamas.

Cutting Edge Transplant Surgery

Wednesday, May 27, 2009

Thank you - Edition "C"

We want to say thanks for some of the cool presents that we've received. First, thank you to Dr. Timko for the package:

Jake also wants to thank Alec (from whom he got his middle name) for the excellent Yu Gi Oh cards.

Spurs did not win (afternoon update)

No big changes. Jake is off the IV, and has been ordered to continue to drink lots of fluids. We'll see how he does tonight. The entire transplant and nephrology staff is soon to be off to a transplant convention in Boston this weekend, so we're hoping to be discharged tomorrow.

I went home to watch the game. I was asked not to spoil the result. I won't, other than to note that Tottenham did not win the 2009 Champions League. Further, I know that Spurs did not win the 2009 FA Cup, the 2009 Premier League, or the 2010 Champions or Europa Cup.

5/27 morning update

He's getting really frustrated with having to be in the hospital even though he feels good. He's eating and drinking fine.

We hope to do some arts and crafts today. He gets his reading in, but it's all either websurfing or Yu Gi Oh. We have him too well-conditioned, because he refuses to go to the playroom because there are germs there.

It seems to have stopped raining. When it rains, the local traffic is unbelievably bad - so bad that it's easier for me to stay in the room than go home for a break.

The big soccer game is on at 2:45pm. I'm currently negotiating for tv access at that time.

Tuesday, May 26, 2009

5/26 Evening Report

The initial reading of the biopsy is identical to the previous biopsy. No rejection, but the same reversible damage (necrosis and ischemia) from the initial antirejection medication levels. He's very sensitive to his fluid levels, but he's been superhydrated on IV fluids for the last two days 2 days and his creatinine levels have barely moved since we got here. The potassium came down after the initial treatment, and has stayed at that level. The next steps haven't been decided yet.

After doing a lot of research, I went to Best Buy to purchase a laptop. I pointed the one I wanted from the display, but they suddenly decided (after I declined the extended warranty and the Geek Squad setup) that they were out of stock. I'd go mail order, but then I lose the instant gratification.

5/26 Afternoon Report

He's out of the recovery area and back in his room. Nothing substantive to report. We need to order a range of soups for delivery, because his excellency was not pleased with the (admittedly gross) selection in the cafeteria.

5/26 Morning Report

We're outside the operating room waiting for the completion of the biopsy. He'll be groggy and hungry afterwards. Once he sharpens, he'll ask about the Yu Gi Oh deck that I promised I'd look for at Walmart. That gives me about three hours to find them or create my own on the computer.

He's remarkably stoic about the whole thing. He's sick of the process, but he's not bitter.

He's a little stuffy. I hope my allergy attack isn't a cold, and I hope he didn't get it.

One of the laptops developed a tiny (at first) screen crack, and I've been watching it slowly spread across the screen. Looks like a Best Buy trip this afternoon.

Monday, May 25, 2009

New research on children's health care

He's scheduled for another biopsy (his third) tomorrow morning. He feels good, but is frustrated with this process. They still don't know what caused his potassium to rise. They say it's nothing he ate or drank. You have to be careful - I read the label on something and saw that it was "dangerously cheesy." Sounds like a product liability lawsuit waiting to happen.

Memorial Day/Spring Bank Holiday

He had a quiet night. Everything is hooked up through the port catheter, so they don't have to bother him to draw blood or administer new IVs. There was a 2:00am blood draw that he didn't even notice. We're on a different floor than our previous visits. On the other floors, the nurses wouldn't touch the port catheter. On this floor, they have no problem doing that. This is surprising, because this floor appear to treat less-intensive cases. There's open access to this floor - no passes or permission necessary.

They treated him with insulin and sugar serum to get his potassium level. We much prefer that to the terrible tasting drug they usually use. It is somewhat ironic that they can use a diabetes-related treatment for levels that are elevated due to fruits and vegetables.

The sporting event with the world's biggest financial jackpot is 10:00a.m. this morning. It's the Championship playoff game between Burnley and Sheffield United. The winner gets to join the Premier League and receives $150,000,000 as part of the Premier League TV contract. The loser gets nothing. I couldn't figure out why the game is today, because they don't celebrate Memorial Day in England. Instead, today is the "Spring Bank Holiday" in England.

Sunday, May 24, 2009

The origin of Skittles

Very informative.

Yes, we're bored. At least everything is hooked up through his catheter, so no more needles today. He's on a bunch of meds and we'll have more tests tomorrow.

Hospital info.

We're in Room 4510. Room phone number is 352-265-0045, but call us on the cell unless it's an emergency.

Two observations. First, is it a southern thing, a hospital thing, or some other thing that explains why people don't say "You're welcome" here? The response to "thank you" is "mm hmm"? What is that?

Second, it took us an hour and half to get admitted even though there was nobody else waiting and they knew that he was an emergency admit due to the potassium. The reason - the charge nurse was "on lunch."

The good news is that there's no IV, and they will be taking his blood tests out of his port catheter. No pain, no problem. He's cool with the hospital experience when there's no pain. He was expecting an IV, but didn't want anybody to talk about it in front of him. He'll have an ultrasound either this afternoon or tomorrow.

Back to the Hospital

We just got the results. His levels are rising (Creatinine at 1.7, Potassium at 6.5) and we're leaving for the hospital. He'll be readmitted. We have stop off on the way to the hospital to buy a second Yu Gi Oh cartridge so we can duel against each other wirelessly. When I told him the bad news, it was the only distraction I could think of.

5/24 - morning update

It's 12:34, but it's still only a morning update. We had to be at the hospital by 8:00a.m. for a blood test. We don't know the results yet. After we came home, Jen and Jake went back to sleep.

I'm on a cocktail of allergy medicines (don't know if it's the rain, the season or the apartment), and have been sleeping more during the day than I am at night. I hope to go for another bike ride this afternoon. I took the new fixie out yesterday. It was good to get out but (1) I've lost a lot of fitness over the past three weeks, and (2) it will take a lot of tush time to break in the brand new Brooks saddle. Fitness or not, it's a pretty bike.

Jen's parents went home today. They were an enormous help to us. I had initially planned on going home tomorrow and coming back on Wednesday, that that all changed after the last hospitalization. I'm now hoping to go home next Sunday and come back on Wednesday.

Saturday, May 23, 2009

5/23- a little exercise

He's feeling good, as you can see from the video below. We had two excursions. The first was a trip with Jen's parents to a Florida State Park called the Devil's Millhopper. The park is only a half-mile from the apartment. It's a giant 10,000 year old sinkhole that is as close as you can get (in North-Central Florida) to a rainforest. I kept telling the family that every step down would later require a step up, but nobody listened. The trip down (there's a boardwalk and lots of steps) was beautiful. You can see the waterfall in the background.
The trip back up was the family Bataan march. Afterwards, Jen took a nap and I took Jake to the card store and to Krystal.

We go for a blood test tomorrow morning, so we'll see how things are really going.

5/23 Update

This is the happy dance. We're in the apartment, feeling good.

Friday, May 22, 2009

Jake's guest autobiographiblog

First things first. I am thankful they won't have to keep poking me, but I still don't like the staff at the hospital. If I could say anything right now to them -- as Dr. Doofenshmirtz once said, "Thank you and curse you."

I also want to say hello to all my friends and tell them that I'm doing well.

If you want to know a good show, watch Batman:The Brave and the Bold on Cartoon Network.


Three working organs.

5/22 afternoon update

Things are good. We're waiting for the resident to issue the papers so we can be discharged.

Our post-discharge instructions are not as severe as we had feared. He can be around other people, as long as they haven't been sick and haven't travelled to swine flu regions recently. In the words of the transplant surgeon, "we did all this so he could live like a normal 9 year old".

I went to the bike store to pick up my bike. They showed me three separate places where there are cracks where the carbon meets the aluminum lugs. Easy come, easy go. (It was my beater bike, and I had put 15,000 miles on that frame). I ordered a new aluminum racing frame ("Skeletor" by Spooky Bikes) so that they can move the parts over. No more carbon for me. Meanwhile, I'll ride a steel fixie for a week.

5/22- Morning report

Uneventful night, interrupted by frequent bathroom breaks. It's not that he has old man bladder, he just has to pee heavy and often. Since he's had high blood pressure for a few years, he's on two diuretics (which increase da'flo). They've discontinued one of them, and may discontinue the other one.

We won't know about discharge for a few hours. Creatinine is down to 1.34, so all signs are positive.

He knows he has to drink, but he's still complaining about it.

The exciting part of the day (for him, not me) is that Rockhopper has arrived on Club Penguin. Whatever that means.

Thursday, May 21, 2009

5/21 - night report

When did they pass the rule that nurses can wear any kind of scrubs (or a t-shirt with a hospital theme)? I'm not criticizing, just curious. What would Florence Nightingale look like in Betty Boop scrubs and Crocs?

As long as Jake continues to improve, and drinks at least 50 ounces of fluids a day, we should be able to be discharged tomorrow. We really need to get discharged tomorrow, because if we don't then there's a chance that we wouldn't get discharged until Tuesday. It's very difficult to get discharged on a weekend - especially a three day weekend.

Tomorrow, I get to pick up a road bike that was shipped up to Gainesville (Thanks Martin!). Hopefully on Saturday I can link up with the local club ride. With three weeks off, it will hurt (a lot). There's a stage race in Ocala in a few weeks. We'll see.

5/22 - A non-ambiguous good report

The biopsy came back. No rejection. The kidney damage is apparently from the initial high Prograf levels and from the initial dehydration, and is fully reversible. That means that the recent improvement is actual improvement. They are now taking him off the steroids

If he can keep himself hydrated, we can probably go home tomorrow. He needs to drink at least 1500ml per day, which is about 50 ounces. I'm sure develop some kind of bribe/tracking system to incentivize him. If it was solely my decision, we would work on a threat/more threat incentive system. As an ultra-liberal, I'm not sure which approach suits my political beliefs. As a care-giving parent, I veer toward old-time absolute monarchy.
I went home and exercised for the first time in three weeks. It wasn't transcendent, but I finally have that "good sore" feeling that I crave. It's a different and better sore than the "sleeping on a chair for three weeks" sore.

5/21 - morning update

Still flowing. . .

He feels pretty good this morning, and was actually hungry at wake-up. He devoured a leftover sub from last night. Creatinine is down to 2.42, and potassium is improved. The morning lab results are encouraging, but for the fact that the improvement may because they are giving him the anti-rejection medicines. We hope to get the biopsy results today, so we'll find out whether he's experiencing rejection.

Thanks to the Blitzers for the chocolate package.
Wi-fi internet appears to be down at the hospital (d'oh), so I'm using the broadband modem I got from work. For a while I thought the laptop had died, which would have given me a golden excuse to go laptop shopping. Am I cool enough for a Mac? I doubt it. I do like the new Microsoft commercials (and I like Vista), but nobody is handing me cash to go computer shopping. I'm also considering buying a netbook to play with, but none of the local retailers have the linux models available and I'm too instant-gratification to go mail order.

Wednesday, May 20, 2009

5/20 Evening report

I have no idea how Jake's kidney is working, but he's feeling good. Not as much tummy pain tonight. The clinical writeup would be "still hurty poo, but not as much tummy pain in bed". He's been peeing an enormous amount post-biopsy. I don't know if that's good, but it's impressive. He's still on the steroids as a prophylactic/preemptive rejection treatment, but there don't seem to be the usual steroid side effects (mood swings, acne, 60+ home runs). Maybe the steroids are spurring the kidney? We'll see.

They hope to get the biopsy results back tomorrow afternoon. He's been busy working on the new Yu Gi Oh Nintendo DS game, but there's no denying that he feels that he's stuck here and that he's desperate to go back "home" to the apartment. We have no idea about the timetable for discharge.

He's certainly a sophisticated medical consumer. He just told me "This IV sucks. They put it too low on my arm." I don't know when "sucks" joined his vocabulary as an adjective, but he's remarkably perceptive about the medical goings-on.

He is pleased with the Sony "Children's Headphones" that I bought. They are built for smaller heads, and the cable connects through only one earpiece, so it's not as restraining. Worth the $15.00, and highly recommended for hospitalized kids. I know that he looks forward to the wireless headphones in the car (for the ride home).

It's been cold (for Florida) and rainy all week. I may need to buy a long sleeve shirt. I've been rotating t-shirts and shorts every day.

Bloggy McBloggersson signing off. . .

Genie in a bottle

Last night, the child life worker asked him what he would ask for if a genie could grant him three wishes. He said "First, all the Yu Gi Oh cards in the world. Second, all the money in the world [to buy cards]. Third, all the gold in the world [to buy cards]." He has no consciousness of the fact that he's sick (although he's really tired of the hospital).

"Speaking of wishes, you know what I never understood? Genies! They tell you to wish for anything you want and then they add some terrible twist. Like you wish to jump high so he turns you into a frog. Why? Who gains from this? The genie? Where's the benefit? You should be fighting genies, man, not me. I'm not the problem; genies are the problem." - Heinz Doofenshmirtz

In Recovery

He's out of his biopsy and in the recovery area. He's always groggy and grumpy after anesthesia, and this is no exception. Jen is staying with him while I take my daily nap.

5/20 - Biopsy happening now

They brought us down to interventional radiology around 11:15. We spent 20 minutes answering the same questions we've answered 15 times before. He fought the sleepy medicine for a few minutes, but he finally fell asleep and they started around 12:15. No word on the morning blood test results.
The morning was filled with people denying what we were previously told, and several discussions where medical personnel referred to other hospital divisions as "they" (i.e., "we" have no control over what "they" do). Nice.

5/20 morning report

"They are idiots. They should have had radiology do it the first time. If they need practice, they should practice in school or on a dummy." Tough talk from a 9 year old.

We're waiting to be taken downstairs. Things are behind schedule. He hasn't noticed that he didn't (and can't) eat. Hopefully, the procedure will begin before he gets hungry.

We walked down to dialysis so they could take the morning blood sample from his port catheter, because the IV isn't drawing blood anymore and I didn't want the morning drama from another needle prick. He's walking OK, but the hospital pajamas are way too big and I have to hold his pants up when he walks. He doesn't fit the suit.
Back at home, the office seems to be marching along fine without me.

Tuesday, May 19, 2009

Forever Red!

Biopsy 9:00 tomorrow

He's scheduled for a 9:00a.m. CT-assisted biopsy tomorrow. The various nephrologists and transplant docs came down to us and mea culpa'd.
Given that the full results won't be in until Thursday evening, they are preemptively proceeding as if rejection is the problem and administering steroids starting tonight. This is the "Power Rangers" treatment method, where they keep getting their butts kicked by the enemy until they get into their MegaZord form. Why don't they just start with the Zord? In this case, I know the answer (we chose Shands in part because of their no-steroids transplant approach), but I have all this pent-up Power Rangers trivia knowledge that I don't get to use anymore. Tommy rules! Best Red Ranger (and Black Ranger) ever.

5/20 - no biopsy today

Funny thing about the medical industry . . . As a lawyer (and someone who runs an office), I hear a lot (especially from doctors) about how bad lawyers (and insurance companies) are, and how the medical profession suffers as a result. One converse of that is the comparison between the two industries. As a lawyer, customer service is paramount. We do what the client needs, when the client needs it. No excuses. Ever. No "we don't have the manpower". No "sorry, budget cuts have left us shortstaffed". On a daily basis, the customer experience in the hospital is a series of incidents where they don't care about the "customer", because they have "triage" issues. In other words, they are too busy. In my world, we plan for these things. If one group is too busy, we reallocate personnel. If somebody is an "add-on" because they have an emergency, we definitely don't play martyr and we don't act as if we are doing them a favor by servicing them. If two lawyers need to communicate, they speak to each other. If lawyers interview a client, they would read those notes again rather than having different staff members ask the client the same background questions over and over and over again (I'm looking at you, anesthesia department).

After starving the little guy until 3:30p.m. in the afternoon, they decided that they couldn't do the necessary biopsy today because "they couldn't get an anesthesiologist." I can't imaging ever telling a client "sorry about your kid, but my secretary/paralegal/associate is busy on other things." I certainly wouldn't tell a client that when the client's dad (me) was riding in my elevator two minutes earlier looking at the off-duty anesthesiologists. (It's hard to hide when your name and department is written on your jacket).

He's happy, because he's eating now and because I went and picked up the new Yu Gi Oh game on the first day or release.

P.S. - The anestheseologist (who seems very nice) just showed up to give us the pregame for an impending biopsy. 20 minutes after telling us that Jake can eat, the surgery department sent up the anestheseologist to prepare for the "immediate" surgery. Too late. AARGH!

5/19 - another biopsy today

They are hoping to do another biopsy today - this time with interventional radiology doing an assistive CT scan. It will be an "add-on" to the schedule, so there's no guarantee when (or if) they can fit it in today. They've taken him off fluids and food. I don't mind dealing with hungry demon boy for an impending procedure, but it's hard suffering through it for a maybe-today procedure.
He's in a good mood right now, because the child-life staff brought him a Yu Gi Oh coloring book and the new Yu Gi Oh Nintendo DS game is supposed to be available this afternoon at the local GameStop.

5/19 test results

The morning blood test results are worse than yesterday. Creatinine up to 3.62, Potassium at 57.
He's also stinkier than yesterday. Probably no connection.

Hmmn - Who's the jewel thief on this episode of Suite Life of Zack and Cody? Could it be . . .the staff workers who aren't series regulars? Shocking. I swear, this show is written for 9 year olds. On a related note, we haven't seen the new Star Trek movie yet. Do they have the "red shirts" cannon fodder?

5/19 - Morning Update

Each morning is roughly the same. He sleeps fairly well. We try to go to sleep at 9:45 p.m. They wake him up for blood tests at 7:30a.m. He whines and complains about being woken up and that he won't ever, ever be able to go back to sleep. At 7:45, he falls back asleep until 8:30.

At 8:30, I begin the nagging about how he needs to eat to coat his stomach for the pile'o'pills. He says he's not hungry, so I tell him that he can't complain to me if his tummy hurts later. I'm a black belt in the passive/aggressive martial arts. He doesn't like breakfast food, so every morning it's a struggle to see what I can interest him in eating. This morning, it was Chips Ahoy! (apparently the exclamation point is part of the name) for breakfast. Father of the Year stuff. We'll see if that works. No matter what we give him, the half hour after pill time is usually a tummy ache. I look at the volume of the pills and know that it certainly would give me a stomach ache.

It looks like a Club Penguin morning. Jake is convinced that Rockhopper is coming today. I have no idea what that means, but it sounds very important. It could be the Rapture (of kid's online entertainment), but without Kirk Cameron.

Monday, May 18, 2009

5/18 evening update

An uneventful day. The transplant docs were supposed to stop by with an update, but never showed up. Jake seems to be admitted solely to keep the hydration IV hooked up and so they can keep occasionally track of his intake and output. I feel that we could be doing the same thing at "home", but there's apparently no rush to discharge him.

Jake says "I'm doing good. That's all." He was at least partially clothed for most of the day, so that's a start.

Non-stop TV. Batman: the Brave and the Bold is the best of the current kid shows. It has a good mix of superheroes, and great villains. This is Babyface (who has an Edward G. Robinson voice), and Mrs. Manface. Where's your messiah now, Moses? Nyahhh, see.

Thank you to Susan Billante, Candace Grosman, Robin Seiden, Michaela Bittner, Bobby & Barton, and Marilyn Thomas for keeping us remarkably well fed through

5/18 Morning Update

Creatinine levels are slowly coming down (2.4), and Prograf levels are down to where the doctors want them (11.5).

After breakfast (dry frosted flakes) I dragged him out of bed, dressed him (to the best of my inadequate ability) and made him walk around the floor. He's now back in bed and watching TV.

He's got bags under his eyes. That could mean he's retaining fluid. I don't think that it's from a lack of sleep (over 10 hours a night), but it seems to happen when he's woken up before he's ready. He still has tummy aches in the morning, but they aren't lasting all day.

Thanks to Uncle Eric, Aunt Yvette, Cousin Zach, Cousin Brooke and evil parrot Pepper for the care package of comfy clothes for the recovering pair.

Sunday, May 17, 2009

Slight non-substantive disappointment

Jake and I were watching Freaky Friday (the Jamie Lee Curtis/Lindsay Lohan version) right before bedtime. I asked him what he would do if we switched bodies. He said he would be lazy and hang out all day, and spend all my money on Yu Gi Oh cards. He said he could use my credit card, because he knows how to spell my name. I asked about what I would do in his body. He said I could go to school and do all his school work. That's it. No transcendent revelations.

5/17 evening report

We've been in a holding pattern all day - dumping fuel over Kennedy. No developments on the drugs or the renal levels. I did get him to put on clothes and take a walk around the pediatric floor - by purchasing cotton candy at the supermarket and telling him that he didn't seem well enough to eat it today. That got him up and out. Jen says it ruined his dinner, too. Eh.

I signed up for the HD internet package. I'm not really in the mood to watch a slow-moving sport all night, but the picture is incredible. Anything looks good in HD. He won't let me get within three feet of the tv remote, so this (and my thermos) is all I need.

5/17 - morning update

Weird morning results. They've been cutting his daily Prograf dose, and his Prograf blood level is - up. They started him on sodium bicarb yesterday, so his bicarb levels are - down. Creatinine levels went down a little (2.9 to 2.6), which is good but slow. BUN is in the 30's. He's looking a little puffy, so they are cutting his fluid IV levels.

Uneventful night. He slept well. I watched soccer and rugby on the internet. Lots of really good relegation battles in the Premier League. That's one of the best parts of European sports - the bottom three teams in the league get dropped down to a lower league, and the top three teams in the lower league get elevated. It makes games involving the bad teams much more exciting at the end of the year, and turns the "minor league" playoffs into a big deal.

I was going to sign up for to watch live baseball, but they black-out all Marlins (who deserve to be relegated) games and the Yankee game was already over. I'm a little afraid it could be a gateway drug back into fantasy sports.

In unrelated development (except that he's a Yankee fan), the NY Times quoted my dad in an article on travel bargains.

Our mailing address

I finally have our mailing address for the 2 bedroom apartment that we're "staying in" (and that I only occasionally get to visit):
4830 N.W. 43rd Street, Apt. 93
Gainesville FL 32606
What's the point of spending hours every night surfing the net if there's no mailing address to have junk delivered? I think I bought six pounds of misprinted pens last night. Such a deal.

Saturday, May 16, 2009

5/16 evening report

Nothing exciting going on tonight. TV and computer for Jake. We spent some time negotiating with the staff as to the timing of the early morning drugs and blood draws. Momma advised the nurse that if they don't do a set of renal function screens as part of the daily blood tests then she's going to sue them. Momma got what she wanted.

5/16 Afternoon report

A lazy Saturday afternoon. Jen's sore. Jake feels sorta crappy, and is still having tummy aches. His kidney function numbers are still going up (in a bad way). Creatinine at 3.8.

His BUN improved somewhat, but that may be because he isn't eating much protein (or anything else). He allegedly ate more today, so we'll see if that's reflected in tomorrow's levels.

While I was out, they washed him with no-water-necessary body wash, and then took him for an ultrasound. Coming down the hall, I had a sense he wasn't in his room (probably because I couldn't smell him)

5/16 morning report

No further updates on the kidney issues.  He slept well, but is still having tummy aches.  One thought is that he's taking all of the morning drugs on an empty stomach.  Unfortunately, he's never been a breakfast eater, and hasn't accepted my suggestions that eating would help avoid the pain.  He's tired of being in the hospital, but the docs believe that waiting and watching is the best course right now.

Mommy says she feels great. Minimal pain.

I stayed up until midnight to watch a League One championship semi-final soccer game (Scunthorpe/MK Dons) that was scoreless through regular time and overtime.  It then went into a penalty shootout.  At midnight, right in the middle of the shootout, the network cut away to another show. Aaargh! To make it ever worse, the program (Australian Rules football) that they cut away to show is blacked-out in the US, so it went to black screen.  

Friday, May 15, 2009

5/15 evening report

Other than the occasional tummy issues (which are brief but intense), he's in pretty good spirits. They don't sponge bathe him here, and he's currently a very smelly little boy.

The room is filled with ten different kinds of candy that his grandma brought him. I'd worry about overeating and diabetes (which is an issue with kidney transplants), but he eats so little that it's not a problem. He likes variety, but not volume.

The lead nephrologist came by in the evening. He's optimistic that any kidney damage due to Prograf (immunosuppresent) levels would be reversible, but he doesn't know whether that is the actual problem. He hadn't met with the transplant surgeons (who gave us the previous information) but his tone seemed a little different. He's skeptical that the problem would be caused by an obstruction in the uterer, because he's seen the ultrasound and doesn't think that the small obstruction shown on the ultrasound would cause these symptoms.

Biopsy/Mag3 results

Some news after the biopsy and the Mag3. The biopsy didn't get a sample of all of the relevant kidney tissue, so they may need to do another one.

From what tissue they did get, it doesn't look like an organ rejection, and it doesn't look like CMV or BK (two viruses that can come post-transplant).

It could be a number of things - (1) the Prograf drug level after transplant could have stunned the kidney (which the kidney can recover from on its own); (2) tubular necrosis of the kidney (this would be bad, but they need more info); or (3) a blockage in the ureter could be stopping up the kidney. They think they see a partial blockage of the uterer on the ultrasound. If this is the problem, it will require surgery. We'll see. Either way, another weekend for me on the chairbed.

Jennifer's Blogging Again

A big shout out to my wonderful Mom (also known as Blah Blah by Jacob) who has been with us these past two weeks non-stop. She's amazingly supportive and helpful. She makes sure that Jacob eats, drinks and is comfortable. She makes sure that I eat, drink and rest. And for those of you who know my Mom she is a very strong advocate for our care and treatment. She doesn't mince words and makes sure that everyone is doing their jobs. All this and she has Chronic Lymphatic Leukemia and and she just finished 5 months of Chemotherapy 1 month ago. Right now she is down picking up Jacob's much awaited Yu-gi-oh Cards from Shipping and Receiving in the bowels of the hospital. Mom, we love you very much!!!!

On another note, the Transplant team was in this morning and said that they are very concerned about Jacob's continued trend of upward numbers. They said that there could be an obstruction in the ureter that is causing the kidney to back up. If that is the case, more surgery would be required. However, they won't know for sure until the biopsy results come in late this afternoon.

Larry is out at the apartments, moving from the 1 bedroom to the 2 bedroom. This means that when we are released from the hospital, he will finally have a bed to lay his weary head on.

5/15 morning update

Bedrest seems to have helped. They cut it down to 18 hours from the full 24. He feels pretty good this morning. The attending nurse said that she's seen little boys on bedrest hold it in for up to two weeks rather than go potty in the bedpan.

He was brave through the early morning blood draw. Much less trauma than usual.

We probably won't have any test results for a few hours. We're anxiously awaiting the results, as well as the box of Yu Gi Oh cards that Uncle Noel and Aunt Dita FedExed to him (which will inevitably get lost somewhere in the mail room).

We've become very well-fed. Thank you to the Cosgroves and the Aldrichs for the Gator Food account. We highly recommend the Thai food at Merlion and the pizza from Leonardo's Pizza. Since I haven't run or biked in two weeks, I'm porking out.

Thursday, May 14, 2009

5/14 boredom report

Random hospital thoughts:

You would think that after a few months in the hospital over the past two years, I would know what the beeping noise on the IV pump means and how to stop it. I don't.

The hospital has outsourced most of its cafeteria operations to Wendy's, Chick-Fil-A, and Subway. This guarantees repeat customers. On a separate but weird note, Shands is apparently sponsored by Pepsi, and no Coke products are available anywhere. Diet Dr. Pepper is omnipresent, which is a positive development.

Why are ice cubes called "ice chips" at the hospital? Why do hospital blankets have the blue stripes on them?

The hospital housekeeping staff doesn't work on weekends. Apparently sick people are neater over the weekend.

Why are my sports training aids (Polar, Garmin, etc.) much more sophisticated and user friendly than what they use at the hospital to track vital signs?

Shands has awesome coffee concession stands ("Opus Coffee"). The coffee staff and the auto valets appear to have been hired from the cast of 90210. You have to love a college town - everybody's so young and perky.

5/14- status report

I hate to do another entry, because Jen's guest entry should stay on top. You need to promise that you'll continue on and read her entry. Do you promise? Well, OK then.

Jake is on absolute bed rest for 24 hours to recover from the biopsy. This means bedpans and similar problems that a grown 9 year old really despises. In retaliation, he refuses to go potty, and his mood has adjusted accordingly.

The lead nephrologist came by and told us that there may be some rocky times post-dialysis. He then corrected himself and said that there would definitely be rocky times post-dialysis. The current presumption of the nephrology team (without seeing the results of today's tests) is that the doses of anti-rejection medication immediately following the transplant may have had a stun effect on the kidney. If that's the case, they say that it's reversible. The blood flow to the kidney is good, and he's still putting out urine. They have not done a blood test today, so we don't know what today's creatinine levels are.

The technology repair team came upstairs and restored access to some of the missing kid channels. Given that it's a college town, I may put my comparative literature and film theory classes to use and do a shot-by-shot analysis of one of the Disney shows. Kind of an "Inside the Actors Studio", but with less discussion of "the craft" and "the body of work". I need to really explore the Zack and Cody oeuvre.

Special Guest Blogger

First and foremost special thanks to the ultimate blogger, you know him, you love him --Larry. He has done an amazing job at keeping everyone informed. More importantly he has kept Jacob happy and entertained for these last weeks. We are currently recovering from the Kidney Biopsy and Mag Scan. Jacob is stuck in the bed for 24 hours and not very happy about the confinement. During the Mag Scan (a nuclear medicine scan for kidney function) they pumped him full of Lasik and now he has the urge to urinate every 5-10 minutes. I'm up and down with him and I have to say that I'm pretty tired. In a perfect world, I'd be lying in bed eating bon bons and watching my shows while I recuperate. Instead, I'm spending the days in the hospital helping to take care of Jacob. However, I would not be any where else in the world right now. I told you all that I'd be up and around in record time and now they are looking into a special entry into the Guiness Book for Kidney Removal Recovery. Larry is off getting a much needed rest and shower. We move into our 2 bedroom apartment when we leave here (whenever that might be). We are all looking forwarding to getting back to our temporary home. Thank you all for your thoughts, comments and prayers. We will get throught this!!!


Waitin' is not the name of a Miles Davis album.

Jake went into surgery at 10:45a.m. for what was supposed to be a one hour (or less) procedure. We then went down to the waiting room. At Shands they don't let parents into the surgery room or the recovery room.

Hearing nothing. at 1:00p.m. we got nervous and went up to his room (which was empty). I then camped out in front of the doors to the surgery department, and ran into our nurse and anesthesiologist - who were wheeling in another patient. I asked how Jake was, and they said he wasn't out of post-op yet. I would have liked to have known he went in to post-op. They then called us to to come and visit him in post-op. We went down, and after a few minutes of stalling, they said that he had been transferred to his room (where we had been waiting). To top it off, when we did get to the room, his first words were "Why weren't you there when I woke up, like you promised?" Tough stuff.

They will send the biopsy to some out-of-town undisclosed location, and they are supposed to get a reading and report tomorrow. We won't be discharged tomorrow until those results are in and assessed.
I've been told several times that he's scheduled for a Mag3 test, but nobody knows when it is or what he has to do to prepare. Standard hospital crap.

Something else to do while he's under anesthesia