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?   

Experimental voicemail

Since I already have his car picked out for when he's 16 (1988 Volvo Diesel Wagon), I signed up for a new Google Voice number (786-379-JAKE) so I can pass it on when he gets his own phone. Until he's ready, I'll use it as my number. If you call that number, it's supposed to forward to my other numbers. If it goes to voice mail, it sends you an email with the recorded message and emails a transcribed message. Cool.

Funny windows issue

I just backed up my hard drive and noticed this issue.

First day of the new regime

We now do the weekly clinic on Mondays. Today was Jake's first day with a non-catheter blood draw, so I went to the hospital with Jen and Jake so he could sit on my lap. He'd been worried about this for days, but it went very well. Jen had pre-treated his arm with the anesthetic cream, and the phlebotomist did a great job. The fact that the first one went well will make our lives much easier, because he won't be worried about it for future visits. No blood test results yet.

Consumer plug - Bought an Acer H213H 21.5" LCD monitor for 160.00 at BJ's Warehouse club yesterday. If your computer can put out a 1920x1200 signal, it's awesome. It also has an HDMI input so you can use it as a small TV.

Tournament Recap

Jake had a great time at his Yu Gi Oh tournament. I was really worried about it, because (1) I didn't know how he would deal with losing; and (2) I didn't know how well he would do.

He lost his first round pairing to a 17 year old kid in a tiebreaker round. He lost the first duel, won the second, and barely lost the tiebreaker. The whole tournament had to stop because Jake's round took much longer than the others, and they had to wait for a winner. The fact that it took a long time was attributable to the closeness of the duels, not Jake's age or relative inexperience.

Jake lost his second round fairly quickly to a 16 year old who had a deck Jake hadn't seen before.

He was in very good spirits, and had no problem losing. He was also a good winner in the duel he won. It was neat to see him talking about Yu Gi Oh issues with the older players.

It looks like we'll be doing this every Saturday afternoon. He's now officially registered in the national ranking system.

That's Jake in the yellow shirt.

We're going to a Romanian restaurant this evening ("Transylvania"), so that should be fun.

Post-surgery

Jake is doing great.  The catheter spot is sore, but he otherwise feels great.  Today he is entered in his first real Yu gi Oh tournament.  They have a tournament at the local card store.  He'd always known about the tournaments, and this week he decided that he wanted to enter.  The owner suggested  that he just watch and learn, and asked one of the kids to show him what to do.  Right now he's beating the kid who is supposed to show him the ropes.

Jen and I are going to try adult date night again tonight.

Out of surgery

We're in the recovery room and Jake is slowly coming around. He feels groggy but good. He's got a band-aid where his catheter was.

He fought-off the anesthesia as long as he could. He tried holding his eyes open with his fingers, and he still can't figure out why that didn't work. As an educated consumer, he asked the doctor (right before falling asleep) how many times she'd done this procedure before.

The last time?

Jake has surgery today to remove his port catheter. We need to get there by 7:30, and they hope to have him on the table by 8:30. It's a general anesthesia procedure, so he'll need some time to recover. However, we don't expect to be admitted to the hospital, and presume that we can take him home in the afternoon. The recuperation is a week (or two), and then he can take real baths, go swimming, ride the mechanical bull, wrestle gators, etc.

Jen and friends

We had some friends come over Friday evening. That's Susan (middle) and Michaela. I hadn't yet figured out how to use the fill-light on the new camera.

Jake and dad

An overstuffed SUV