Friday, April 13, 2007

Jacob's 4/12 Status Report

Thursday will begin our third week in the hospital. Things are stable. Stable is good.

We had Don Imus negotiate a truce with the druids, so the faiths are aligned in our favor. Yesterday morning, they took Jake off the respirator, and that's worked out fine so far. He can talk a little. He doesn't have much in the way of vocal chord strength, so talking is more of a controlled exhale. The first sentence was "Mommy. My tummy hurts". Jen then wanted to make sure he had his wits about him, so she held up a toy and asked who was on the package. He rasped in a breathy voice -- "Darth Vader". It was funny, but I guess you had to be there.

Last night he clotted up another continuous dialysis machine (his third), so they took him off the machine for good (we hope). They were planning to do that anyway, so this wasn't a big deal. Tomorrow he starts daily hemodialysis (3 hours a day) treatments. Since he isn't connected to any large life support machines right now, and is down to only 6 contemporaneous IV medications and drips (from a high of 17) you can walk into the room and look at him without having an "oh my g-d" response. Those of you who have been to the hospital will know what I mean.

On the neuro side, we think everything is OK, but there's no way to really test him. He's on methadone (as they try to wean him off the morphine) , and he's zonked out right now. I could take him to the Pink Floyd laser show at the planetarium and he'd fit right in. His parents are still on heavy medication (mostly cookies), and that will continue.

During the next week they'll be trying some things to see if the kidneys can restart on their own. The medicine normally used for that is heparin (a blood thinner), which they cannot give him due to the strokes last week. If nothing changes on that front, they'll do a kidney biopsy next week.

We start physical therapy and occupational therapy tomorrow. Since he's been bedridden and sedated for two weeks, he's got the muscle tone of an overcooked noodle. Our goal is to bring him back to al dente, but that'll take a while. He's still much weaker on the left side of his body, but we presume they can work on that quickly enough. He'll probably need speech therapy too, which gives us an opportunity to reinvent him. We're thinking of having him learn a fake British accent (kind of like Madonna after the Guy Ritchie marriage).

He's not digesting anything yet, and his tummy is extremely painful, so his meals are dextrose through an IV. Once that ends, they may be able to discontinue the insulin, which means pancreatic function is coming back nicely.

There's still the usual bed sores, infections, side effects, etc., but nothing noteworthy (easy for me to say, but annoying for him).

We are blessed to have so many friends, and we appreciate all of the visits, thoughts, gifts and positive karma. I can't even begin to name all of the above-and-beyond charity we have received, but special thanks must be given to the Akerman Fort Lauderdale office, which sent an unbelievable care package to the ICU nursing staff (strategically brilliant!), the Carver family, which has fed us several times and provided some much needed (albeit unlicensed) psychological therapy, and the Country Day moms (Kathy, Candace, and others) who prepared a class get well video DVD that is worthy of at least a local Emmy.

2 comments:

Anonymous said...

Cool website

Anonymous said...

Hear that Jake is coming back is a real relief, you don't imagine how much prayers my family and friends have done all over the world. My sister Alex in Canada reads the salms every night, my cousin, husband and child in Long Island. NY pray to God, my cousin in Antalya, Turkey and his husband pray to Allah (they are muslims), my aunts, mother, sisters and cousins in Colombia pray day and night to all the Saints, and I firmly believe the Angels and God are 24/7 giving him the peace and health he needs. My soul & heart are with you. See you soon.
Lilly and Ivan.