Bi-annual status report

The kid is looking good, and doing well!

The best medicine

When your kid isn’t feeling well, the best temporary medicine is to get them talking about something that really interests them.  All of a sudden, their eyes open up wider, and they show a spark.

Jake’s been out of school for over a month.  He’s been achy and nauseated.  Luckily, there have been two separate events that have kept him from sleeping 12+ hours each day – the release of Pokemon Black and White on October 7 (he finished it in a week), and the release of Skylanders:Giants on October 21.

Since he’s my kid, he compulsively multitasks while playing his Nintendo DS/Sony PSP games.  He usually listens to and watches a sitcom on the iPad via Netflix streaming while playing his game.  He plowed through 12 full years of SNL episodes, and has now gotten through 3+ seasons of Monk (the Tony Shaloub show).  Is there any other 12 year old who watches Monk?

After a month of pleading, Jen agreed with me and we’ve taken Jake off the insulin.  He’s has the same blood sugar spikes that he had when he was on the medication.  If the medication wasn’t going to change anything, I didn’t want it.

We’re hoping he starts back in school tomorrow.  He lasted through 3.5 hours of Bar Mitzvah party on Friday night, and 4 hours of Yu Gi Oh tournament on Saturday.  He’s felt crummy today, but I’m still hopeful for tomorrow. 

Too sugary a report

Jake’s been on the mega steroid program for a few weeks. It seems to have stalled the kidney issues, but it’s made him diabetic.  He’s been on a 5-times-a-day blood sugar testing schedule with three insulin injections a day.  The combo of the steroids and the insulin have made him bloated and have caused him to feel lousy.  He’s missed three weeks of school.  He feels so bad that he doesn’t want to sit at his computer and play his games.

So what’s he been doing, you ask?  He sits in bed and plays old Pokémon Gameboy games.  He’s trying to improve his Pokémon scores on his Gameboy.  This will allegedly help him when Pokémon Black and White 2 comes out on October 7.

Since he’s a born multitasker, he does this while listening to old Saturday Night Live episodes on the iPad.  He’s plowed through dozens and dozens of episodes – mostly in the Tina Fey and Jimmy Fallon eras.  Yuck.

A rainy day retreat

I was busy last night (I had promised to help out at a bike race at the track) and Jen took my place for the parental sleepover.  I slept at home, between the very lonely and needy dogs,  The dogs seem very disoriented by the lack of family presence.

I got to the hospital around 9:15am today, and Jen and Jake were both half-asleep.  I think they double-napped, because it's now 12:30pm and Jake is still a bit groggy.

I think we're going home this afternoon. Jake will come back tomorrow (and Wed and Fri) for an IV dose in the morning.  Jake's kidney numbers have stabilized a bit.  They aren't good, but they aren't getting worse.  I think his overall kidney function is at 30%.  You need dialysis when it gets to 15%.  I think his post-transplant numbers were around 45%.  

Easy Saturday Status

Jake's feeling pretty good right now. He's taken 2 naps already (kind of an indication he's a bit drained) and several of his friends are stopping by this afternoon.  Right now he's putting together some Legos with Flynn.  We may have to formally register his desire at the Lego store, because that's what people bring when they visit.  Luckily, Flynn's a Lego nut too, and he has a mental checklist of what Jake already has.

His blood sugar is high.  We presume that's steroid-related, but he's got to lay off sugar and carbs for a while.  It's an odd situation, because pre-transplant people have to go on a low protein diet.  I asked, and they said that they don't adjust a transplant kid's diet until absolutely necessary. Even though his kidney is currently problematic, its apparently more important for a kid to get the protein.

The current plan is to go home tomorrow and come back Monday-Wednesday-Friday for additional IV servings of solumedrol.  There was some talk of staying over until Monday, but I wanna go home. Jake would probably prefer to stay over, because his primary fear is the needle prick, and he's afraid of the Monday IV needle (as opposed to simply keeping his current IV for an extra day).

What's the emoticon for nervous?

I'm not much of a texter, so I don't know the official symbols.  Jake's initial biopsy results came back, and they aren't particularly encouraging.  These bouts of rejection seem to have caused a good amount of scarring, and it seems to indicate that the long-term span for this kidney may only be a few years (or less).  We've got a big visit planned to St. Louis in two weeks to meet with Jake's lead transplant nephroligist, so this may be the lead topic of discussion.

Jake's hanging out in the room watching TV.  Valerie and Kim Carver stopped by earlier in the afternoon.  He's a little grumpy right now, because he's got a blood sugar test in an hour and he's not supposed to eat and sugar or carbs until that's done.  Once it's done, he can eat all he wants. I brought him some Cholula-flavored beef jerky, which is much tastier than you'd think it would be.  Highly recommended,  With all the prednisone he takes, he's a usually a hungry boy. Last night he sent me out at 11pm to McDonalds (at the other side of the hospital complex) for Chicken Nuggets. I did get him a Power Rangers happy meal, because it was a lot cheaper than buying his requested items individually.  I don't think he's going to treasure the Power Ranger toy, but who knows?

I don't know if it's a symptom or a side effect, but he's really puffy.

It looks like we'll leave the hospital on Sunday.  It's a good thing that Monday is a day off.

Kidney Rejection II - Electric Boogaloo

We're back in the "hotel" for a few days. Jake's kidney function blood levels are pretty bad (Creatanine 1.4, BUN 43) .  He had a biopsy yesterday, which tested negative for the various bad viruses and such, but positive for organ rejection. Just like the last two times, we're back in the hospital for a three day IV treatment of Solumedrol (in massive 400ml doses).  Presuming that it works, he may be back in next week for every-other-day pediatric ambulatory treatments.

He's a trooper, and isn't afraid of the hospital or the treatment. He's primarily concerned about the lack of ample internet bandwidth.  He's got the iPad, and has hit me up for purchases of "donuts" on the online virtual simpsons game.  I'm used to sleeping on the chair, and have no problem going to work in the morning once Jen comes in to take over.

Hopefully the end of a book (or at least a chapter)

Jake's kidney numbers are back down - to merely "elevated".  We hope that he'll be discharged today.  He's stil overcoming the flu, so he's been asleep most of the day.  That's very unusual for him, because he usually gets up fairly early and refuses naps.

Since he's getting over the flu, we won't have company for a few more days.  Since he's recovering from the biopsy, that means no swimming or exertion for 10 days. Those two factors probably combine to form a festival of Lego and video games. 

I'm hoping to finsish cleaning the garage this weekend, so that may lead to some arcade gaming with me and Jake.  Otherwise, we'll sit on the couch and hang out and play games.  Sadly, the games reflected a better parenting option than his other preference - a nonstop series of Family Guy and American Dad episodes from Netflix.  It's the better of two alternatives.

Staying the course - in a "happy mood"

Jake just finished another kidney biopsy.  He's much more drugged from the anesthesia than usual.  The procedure was delayed until 1pm, and you can't eat before the procedure, so maybe the emply stomach made him more susceptible to happy/giddy/woozy/goofy bliss.

I doubt that we'll have the biopsy culture back before tomorrow evening.  Since Jake will be finishing a three day course of IV antibiotic and steroids, I think the plan was (as of last night) that we'd get discharged late tomorrow morning.  Hopefully we won't have to go back in after we get home (which is what happened last time).  He's no longer running the big fever that he had when he came in yesterday.  Kidney blood tests are the same as yesterday - crappy, but no worse.

I've tried to avoid bringing any big Lego sets to him, because once he builds them they aren't very transportable.  He takes pride in his work, so he agrees that he shouldn't start anything big until he gets home.  Since he's got the flu, we aren't having visitors, which is unusual for us.  He's killing time with TV, because I've had struggles getting his iPad to talk to the hospital wifi.  Apparently this is a recognized iPad issue involving the inability to handle wifi networks that start with an authorization/redirect page.

The 5th grade class is supposed to call him via speakerphone this afternoon.  I won't be back in time to hear it, but it should be cute.

A few days back in the hotel

Since our last hospital visit, Jake has been on large doses of medications.  He’s been in and out of school because the side effects of those medications.  Over the last few days, his blood test results for kidney function had finally improved to the point where he was back to where he was supposed to be.  Then…

He developed some flu like symptoms yesterday, and by today he was at a 103 degree fever.  When we took him to the doctor, his kidney blood test levels were terrible (far worse than they were two days ago), and he needed to be readmitted to the hospital.  He’s on IV antibiotics for the fever (to make sure it’s not a blood infection), and will be for at least another 36 hours.  We hope to be out by Friday.  If the blood tests still show kidney problems tomorrow, he’ll have a kidney biopsy again tomorrow, and we’ll see what’s going on.

I bought him the Lego chess set, and there will be some games later on.  He’s got his/my iPad, and I’ve got my 3 year old underpowered netbook so I can attempt some Zune streaming music.

Released on his own recognizance

Jake got discharged about 3:30pm today.  They went straight from the hospital to the Lego Store at the Aventura Mall, and picked up some of the new Avengers-themed sets.

He's now moaning and half-asleep in the big bed (with iPad in hand, tuned to "American Dad" reruns on Netflix).  He's got so much steroid in him that he's feeling woozy and groggy.  He looks a little puffy, and I presume that will get worse.  We hope he'll go to school on Monday after a morning doctor visit.

I had the Miami Corporate Run this evening (crowded and humid) so everybody was home and settled in by the time I got home.  I'm looking forward to sleeping in a real bed - with no hourly IV alarms -- and the dogs are looking forward to getting back to their daily 2X walk routine.

Bring on the next challenge...

The hospital's guest internet was down all day yesterday, so I couldn't post.  I wasn't around in the afternoon to field the complaints that the iPad, laptop and Kindle weren't working properly.  I received one call at the office about it, but there was nothing I could do remotely. They fixed it around 3am.  On the other hand, I took a vow this time not to try to fix the IV pumps when they jam or clog.  That shows some self restraint on my part, because one of the reasons that I decided to start my own law firm back in 2008 was that it would give me a chance to try to fix the copy machine myself.

However, I was able to prove my technical mettle as soon as I arrived yesterday.  Jake had taken a trip down to the first floor gift shop (with IV pole in tow) and bought two Hot Wheels track kits - that are designed to be attached directly to the wall.  He decided he wanted them set up in his hospital room - now.  When I got here, the other adults had tried and failed.  However, no mere toy can defeat a motivated nerd-dad.  It's almost as gratifying as when I do house calls to hooks up friends' TVs and stereos.  Almost.

He's in pretty good spirits.  There is talk of him being discharged late today, but we'll see.  The full pathology report won't be done until tomorrow, but they think it's a "1-B" level rejection.  Sounds like his draft status (Too dated a reference?).

They have an afternoon televised game show here. They run the show on the hospital closed circuit channel, and then the kids call a number on their room phones to answer the question.  Jake won the whole thing, and won some Lego prizes.  The trivia force is strong in him.

One bad thing - apparently the current treatment regimen has him completely off refined sugar.  That means no candy right now, and means we can't eat candy in front of him.

A continued thank you to all our friends who drop by and lift our spirits!

A pretty easy night

It's kind of amazing how comfortable Jake is with the concept of the hospital.  He didn't go to sleep until a little after midnight, but he slept well, and woke up at 6:45 in a very good mood.  That would never happen at home.  He's adept at getting in and out of bed, as well as wheeling his IV around.

He was also able to go right back to sleep after the 4am vital signs checks and the 5am bathroom visit.  I had reasonable success in falling back asleep after the three trips  to the nurse desk (2am, 3am, 5am) to tell the nurse about the various alarm beeps that the IV pumps would make. I think it was just him twisting the IV in his sleep, but the alarm doesn't go off when he untwists.

Jen came to relieve me at 7am.  I have a crazy workweek, so I can't linger during the day. I'm going to go home, walk the dogs, and clean up for work.  I have to admit that I am looking forward to not having the Disney TV channel as background noise at all times.

Three of his teachers stopped by yesterday and brought him schoolwork, so he'll be occupied during the day.  After school, there will probably be another influx of visitors.

One of our friends brought a candy basket, so he - and me - were snacking a bit.  I'd kicked the candy habit a new months ago, so hopefully this won't lead to relapse.  My dealer says that this is why the first order of gummy bears is free.

I blame Bradgelina

We'll be staying at Joe DiMaggio Children's Hospital all week.  Jake's kidney blood test results have been elevated the past few weeks.  After trying the usual fixes - (1) making him drink tons of water, (2) yelling at him to drink more water, and (3) repeat; - it was clear that something was amiss.  He had a surgical needle biopsy yesterday, and the docs decided he had some transplant rejection.  Yesterday they said it was acute.  Today they say it's mild.  Full pathology results don't come until Friday.

Based on what we know, they admitted him today to treat him with IV steroid treatments for a few days.  When we get discharged, he'll be on 100mg doses of prednisone.  It may be safer for Mom and Dad here at the hospital.

Many friends stopped by, and he's in good spirits.    The room was packed with good friends (old and young) when I came in after work. Other than the IV installation traumas, the rest of the time he's calm  and watching TV or playing on the laptop or iPad.  This wing of the hospital is brand new, and it's really nice.  The room is huge, and has a couch (which pulls out into a bed) and a lounge chair.  I'll be sleeping here all week.

Since I spent all of last week with my Mom while she had surgery at Sloan-Kettering in NYC, I noticed there seems something going on with family health over the past few weeks.  Jake's elevated kidney levels and my Mom's issues arose at the exact same time that Brad and Angelina announced they're getting married.  Coincidence?  I don't think so.  Let's look at the evidence;

1.  Brad and Angie had the same effect on Jennifer Aniston's sanity.  This fact was confirmed by several issues of US magazine I saw in my dentist's office.

2. She has the sunken eyes of a dialysis patient.  That's evidence of an anti-renal vibe.

3. I tried getting Jake interested in the Tomb Raider video game a year ago, but he didn't seem to like it.  She starred in the movie.

4. Jake's only knowledge and interest in baseball comes from the Nicktoons vs. MLB Stars Wii video game.  Brad's role in Moneyball as Billy Beane was the antithesis of the MLB Stars video game model.

A quick update . . .

Let's see -

Jake got a dog on April 25th. he got a Havanese, which is the recovery dog that visits kids at the pediatric hospital.

We're going to Gainesville on May 17 and 18th for a colonoscopy to try to try to figure out why his tummy hurts every day.

It sounds like an overnight, so there will be time for blogging.

Better news

Jake's creatinine levels are back to his normal levela.  We got the test results in preop, so the biopsy was cancelled and we'll drive back to Miami this afternoon.  I'll include more detail latet - this post is from my phone.

Yom Kippur Update

We've been boogie-boarding in Fernandina Beach all weekend. We were supposed to drive home tomorrow evening, but instead we're driving to Gainesville later this afternoon. Jake is scheduled to have a radiology-assisted kidney biopsy at 11 tomorrow. I hate those late morning procedures, because he can't eat all morning. due to the anesthesia. We'll have to stay overnight at the hospital to recover from the biopsy, and we'll see the results Tuesday morning.

Jake had previously tested positive for BK virus, which is fairly common in the population but which poses a problem when you're immuno-suppressed. His creatinine numbers are up this week, so they want to take another biopsy to see if he's rejecting, etc. If he needs an anti-viral treatment, we may be in the hospital a while because that's a pretty serious IV-administered medicine. I need to talk to the docs, because my view is that all of this can be done, if necessary, at home instead of Gainesville.

Jake has been stalking some pretty serious (and expensive) Yu Gi Oh decks on ebay. I told him that we can't bid on them because we need to save that kind of thing until we need an in-hospital distraction. He agreed. There's a t-shirt for sale on one of the sites that says "My deck costs more than your car." That's an exaggeration for most cars, but a "Lightsworn" deck costs several hundred dollars.

I only brought one laptop with me for this trip, because we weren't expecting the detour. If it lasts, I may "need" to buy another one. That always gives me some editorial fodder.

The Final Post

I keep passing a billboard on the drive to work for Randy Pausch’s “Final Lecture”.   This is the “Final Post” – same sentiment but drastically different circumstances.

We spent the weekend at Jen’s parents’ house in Fernandina Beach.  Jake went swimming and boogie-boarding twice a day, and got to see his cousin Mia and Uncle Frank.  He’s looking good and he’s feeling good.  I’d say that he’s recuperated.

While walking to the coffee shop this morning, I was thinking how truly blessed we’ve been.  From the deep lows at the beginning of this journey, we never lost hope or love for each other and our friends and family.  That love has paid off, and we spend each day with a rare gift – a conscious recognition of how blessed we are each and every day.

Thank you for all your love and support.  You can friend me at http://www.facebook.com/larrysilv for all the latest updates.  I’ve also set up the new Silverman Family blog at www.larrysilv.blogspot.com, so you can keep up with our travels, my consumer rants, and all the other minutiae. 

Weekly update

Jake's doing so well that it doesn't feel right to say he's recuperat-ing. It feels like he's recuperat-ed. He had a surprise pool party early in the week, and has been swimming a couple of times. Today we rented a cabana at the Four Seasons Hotel pool and hung out for a few hours.

My Mom has been in town all weekend, so he had a chance to spend some time with her. Yesterday we went to another Yu Gi Oh tournament, where he won his first round match, lost his second, and got knocked out in the quarterfinals (although it was very close). He's been talking Yu Gi Oh non-stop. He looks and feels good. I'll post some pictures tomorrow (the camera's memory card isn't compatible with the laptop that lives on the couch, an I'm too lazy to hook up a usb cable tonight).

Why is today different than all other days?

Riding home from work today, I rode through dozens of gnat storms. Did anybody notice that today is an especially gnat-filled day?