Something else to do while he's under anesthesia

5/14 - morning update

We're scheduled to go for a "Mag3 scan" in a few minutes. His biopsy is scheduled for 10:30. No eating or drinking until then. He only gets hungry in the morning when someone tells him he can't eat.

After the 30 minutes of trauma when they put in his IV line, he had a pretty restful rest of the night. Of course, when he wakes up to go (and he has the bladder of a 2 month old puppy right now) I have to wheel the IV stand in with him.

No test results back from yesterday's blood tests yet. He looks a little puffy, but not too bad.

Hospital - Round 2 (Electric Boogaloo)

Jake's creatinine levels are continuing to rise, so we've been readmitted to the hospital (room 4460, 352-265-0044, password love) so that they can (1) rehydrate him on IV fluids to see if that helps; and (2) do a kidney biopsy tomorrow morning. We will stay over tonight, and will probably stay over tomorrow night.

He is extremely displeased. To him, the hospital is IV tubes, which means needles and discomfort. He's been through so much that he's unbribeable at this point. There's no reliable card store in Gainesville, so nobody carries the the new Raging Battle series. I'm going to have to have the Miami card store send us some.

Once he's unconscious and under the knife, we're considering an emergency haircut.

5/13 - afternoon report

Cable tv is back on, and we're back in the clutches of the Disney Channel. Right now it's "Pixel Perfect" (a 2004 made for tv movie), but then there's a multi-hour run of Zack and Cody. Ugh. I can't wait for him to have the strength to tackle the stack'o'legos, so I won't feel guilty about the lack of "enriching activity." Jake is hanging out on the couch (sans pants) while Momma tries to take a nap.

No report on the morning blood tests or the ultrasound yet. Kidney function is a little off, but we're hoping that it's a drug side effect.

5/13 experimental entry

We're at the hospital shuttling from test to test. The various departments don't communicate with each other very well. I'm bored, so I figured I'd experiment with blackberry blogging. I don't Twitter, but I guess this is a lot like that. Hopefully, I'll avoid the silly details that people include on Twitter. Did I mention I'm sitting on a paisley chair and eating an apple turnover? (That's the level of most "tweets").

He's bored, but the tummy hurts too much to concentrate on Nintendo DS. Mommy feels better than yesterday (or at least she's telling Jake that so he'll stop complaining. Either way, I heard it.

5/12 - Status Report

The first clinic blood test results are back, and the inevitable changing of the drug cocktail begins. His kidney levels are off, so they are cutting some immunosuppressant doses. We have to go back to the hospital at 8:00 tomorrow morning, and we get to deal with grumpy tired boy again.

On the catastrophic level, the cable and internet are still out (I have an ATT wireless card for my computer, but not the others), and the local card store didn't have the newly released Yu Gi Oh "Raging Crisis"series yet. I'm going to rig up a slingbox setup so Jen can watch American Idol on my laptop.

5/12 - Jacob's autobiographical update

I'm doing well, but these people are making me have so much fluids.
Somebody stop making me have fluids.
Hi to my friends.

Dictated but not read

5/12 Update

We went for his 8:00 a.m. transplant clinic appointment. He wasn't happy about getting up early, but wasn't as surly about it as he was to the nurses in the hospital. We've now come back to the apartment, and he went back to sleep. The cable tv isn't working, so I guess he felt he had no alternative but to go back to bed. I'm' trying to catch up on two weeks' worth of work.

Both Jake and Jen are achy from their scars, but there hasn't been much of a problem with them climbing the stairs to the apartment.

Gainesville is a traffic challenge. We are staying in the northwest portion of the city, and it's a hassle to drive anywhere. The city is laid out in a grid, but they really don't have primary East/West or North/South corridors. The primary avenues still have traffic lights on virtually every corner, so they don't flow well. For a college town, there's a conspicuous lack of traffic engineering. UF is mostly out for the summer, and I'm told that it is much, much worse when that school is in session. One of the nurses told us she's from Ft. Lauderdale, and is thinking of moving back because the traffic is so bad here.

5/11- the eagle has landed

We've been discharged and we're now back at the apartment. Jake was semi-conscious all day, but now that we're back "home" and facing a stack of unassembled Lego star wars kits that he received for his birthday, he seems very sharp. Jen is happily in bed. It may not be Craftmatic or automatic, but at least they are our own sheets and pillows.

I'm unpacking and running errands. We don't have to be back at the hospital until 8:00 a.m. tomorrow.

5/11 afternoon update

Still at the hospital. He's a little dehydrated, so they are giving him some fluids. Once that's done, we should be able to go. He's grumpy and doesn't feel well, but much of that is due to the fact that he doesn't eat and drink enough. Maybe he was switched at birth.

Extra points for identifying the picture reference . . .

5/11 morning update

Mommy was discharged last night. She slept at the Hilton with her mom.

Jake is feeling good and slept well. They woke him up early to do some tests, and he put on his tyrant mask for 15 minutes. The usual early morning grumpiness. I tried to explain to him that it probably isn't the best way to deal with his nurse. On the other hand, maybe being a PITA is the way to incentivize the staff to get you out of the hospital (and their hair). Anyway, he calms and apologizes once he fully wakes up.

We hope that Jake will be released from the hospital today. If we are released today, we will return to the transplant clinic on Thursday for a battery of tests.

I have to go down to the pharmacy in an hour to pick up his medicine supply. I'm going to need a forklift (and potentially a second mortgage). On the other hand, Jen's post-op prescriptions were all generic meds, and the month supply for three drugs added up to $14.00.

5/10 morning update

Happy Mothers' Day. It's also Jake's birthday today.

Jake's got still got some tummy ache pain - probably from the medications. Jake will go home tomorrow. Jen is supposed to go home today, although she may have to stay in her Mom's hotel room so that somebody can stay with her.

We had understood that the nephrology department wanted him to go home at the same time as Mom (i.e., today), but the various medical teams don't really communicate with each other very well. Ultimately, the pharmacy portion wasn't done, and since "they close at noon", we have no choice but to have Jake stay until tomorrow.

If we stay here any longer, he'll get to paint a ceiling tile. That's a tradition for long-term patients in pediatric wards.

5/9 evening report

Jake was high energy most of the evening. He spoke to some of his friends on the phone, and was fairly chatty. More chatty on the phone than I ever am. He's tired and achy now, but it was a good day for him.

Jen is sore and creaky, but also improving.

I am studying for the exam the transplant unit make you take in order to be discharged. You have to recite all the drugs, the dosages and the side effects. That's not easy, given that there are 10 daily medications. You also have to be able to name the symptoms that require immediate attention. There's an open book test, which we've finished, but they haven't given us the closed-book version yet. I wonder if I'm going to have that nightmare where somebody comes and tells you that you need to go back to high school because you didn't pass a required exam. I have that dream a lot, but that's because I didn't do well in high school and it is plausible that I didn't pass all my high school exams. If they take my NY Regents H.S. diploma away, I would have torepay my Regents scholarship ($250.00).

We go to the apartment tomorrow, or Monday at the latest.

Almost out . . .

Jake is feeling very well this morning. He's unhooked from the IV tubes, and is hanging out in the lounge chair in his robe while surfing the internet and watching TV. In other words, he's attached to different tubes. Jen is still feeling lousy, and she's on some medication (Cipro, etc.) that's making her feel woozy.

Jake will probably go home tomorrow. Jen was supposed to go home tomorrow, and hopefully she's stay on that schedule.

It's nice to be out of the PICU. It's so much quieter on the floor, and he doesn't have to be hooked up to all the monitors. He's probably well enough to go into the childrens' activity room, but we can't bring him there because we're on infection avoidance patrol. He still doesn't eat, but he was like that even before he got sick. All he wants is pizza.

I spent a few hours during the wee hours watching sports on the Setanta-i internet channel. Soccer, rugby, Aussie football and hurling. Best $15.00 per month I ever spent. The Giro d'Italia starts tomorrow, so I need to subscribe to that as well. It's a good thing we brought three laptop computers.

We've moved

Two hunters were being chased by a bear. The first hunter says: "I don't think we can outrun the bear!" The second hunter responds "I don't have to outrun the bear. I only have to outrun you."

The best way to get out of the pediatric ICU is when they really need your room. That's when they decide you're well enough to go to the pediatric floor. We're now in 4421.

Walkin'

He's been kind of blue (actually, more of a blue haze than blue moods) since the conception of the transplant, but he's walkin'. He's no longer steamin' at the nurses. No more live evil or bitches' brew - those facets are gone for today, at least until somethin' else starts. He takes 12 pills each sitting (pink, white, and blue in green gel) - straight, no chaser. He's got E.S.P. for when it's pill time.

Tonight he's been relaxin' with the new episode of Batman: The Brave and the Bold and Chicken Little. He's in his cool period, at least until 'round about midnight when he gets tired and gets in a silent way. So what. Lots of giant steps and other milestones have been reached for volume 1 of this process.

Hangin' in the Chair

Jake has able to get up and walk to the bathroom. His kidneys have been waiting for this opportunity for two years, so he's made several visits. He'll do some physical therapy (walking) later this afternoon. If he would drink more, they could detach the last IV line. We're supposed to move back to the general pediatric floor in the next few hours. Jen's got some bladder pain, so they'll put her on some powerful drugs which will knock her out.

5/8- Morning Update (Moanin')

Fairly uneventful night. He slept better. They woke him up at 7:00a.m. to put in a new IV port to take blood, because the old one wasn't working well. He was grumpy because they woke him up, and grumpy because he doesn't like needles, so he was a screamer. One benefit of having a younger patient is that he doesn't know any swear words. Instead, he told the nurses that he hated them and hoped that they die. It's always helpful to properly motivate your caregivers.

He had the bladder catheter removed this morning, and may have the IVs disconnected today as well. There was talk of a Sunday discharge for him. Jen may be tomorrow.

Jake finally gets to eat vegetables

He couldn't eat fresh veggies on dialysis because they have too much potassium and phosphorus.  He asked for and received a bell pepper.

5/7- afternoon update

Things are calmer now. I left for the apartment (to finally go to sleep) at 2:00 p.m., but Jake was giving the inlaws a hard time so I got the call at 2:30 p.m. that I needed to come back to the hospital because he was being "non-cooperative". It took an hour of negotiating to get Jake out of bed and into the reclining chair. I had to send the in-laws out for a Nintendo game (Yu Gi Oh GX: Spirit Caller) and a bag of Krystal burgers. Once I had that in hand, the nurse gave him 5 grams of morphine. After 10 minutes of screaming about how much it hurt (and I'm sure it did), we got him in the chair. He then spent 20 minutes reminding me of how much pain he was in and how uncomfortable he was - until he forgot. Two hours later, he was so engrossed in the game that he hopped back into bed with little struggle or effort. I ate 4 burgers and an order and a half of fries during the negotiating process, so I've got a terrible tummy ache.

Jen's got some numbness in her hands and feet, so they are taking her in for x-rays.