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.

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'

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

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.