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.

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.

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 GatorFood.com.

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.

Sleep mask available at http://www.perpetualkid.com/index.asp?PageAction=VIEWPROD&ProdID=2835

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 MLB.tv 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 mlb.tv 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. http://www.nytimes.com/2009/05/17/travel/17prac.html

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.

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.  

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.