Monday, April 30, 2007

4/30 Status Report - Higher, Stronger, Faster

We never settle for the mediocre. Like Homer's alter ego Max Power, we do everything to the extreme. ("Just strap yourself in and feel the G's").

Having previously had a white blood cell count of 123,000 and a blood pressure of 49/29, Jake wanted to try something different today. He achieved it with a blood pressure of 190/125 one hour after dialysis. He was up to 220 on one reading. It freaked us out, especially when he complained that his forehead hurt.

The blood pressure appears to be a dialysis balancing issue. However, if they now have to treat him for hypertension as an ongoing condition, it's going to take some time to get his various medications in balance. Of course, we want it fixed . . . now. As Homer says -- "There are three ways of doing things: the right way, the wrong way, and the Max Power way! Which is the wrong way, but faster!'

He's in the middle of the C.Diff. stomach infection blues, and is now reminding us of the kind of yucky poo that we thought we had left behind in his newborn years. Our entire hospital hallway has C.Diff., which is disturbing.

I don't know when we are leaving the hospital. Hopefully, by June.

4/30 - Schedule change

We may not be able to go home until the infection improves.  We'll see.

Sunday, April 29, 2007

4/29-4/30 Status Report

Jake would have had a tough day, except he slept through much of it. He's got a clostridium difficile ("C.Diff") infection, which makes his tummy hurt. They are treating it with antibiotics, which also takes something out of him. It's the type of infection that normally comes from extended hospital exposure, and normally only infects patients and the immune challenged. It's our first hospital-based illness -- unless you count the fact they almost killed him on day 2 (pre-ICU) by giving him antibiotics. More on that in a future edition.

C.Diff. is only contageous if you come in contact with his poopie, but as a precaution they've put him on "restricted contact." That means no hugging and no hospital grand tours. In any event, Monday will be a very difficult day to visit because he's got dialysis and because we're trying to get ready for a Tuesday hospital departure.

On the recuperation front, his hand-eye coordination seems good. I'm watching him play Spyro 3 (a difficult game) on our portable Playstation One. He's able to hold the controller with both hands and his muscle memory seems complete. Going forward, physical therapy and occupational therapy will probably focus on building strength.

He's making a urine on a semi-regular basis. It's coming in very, very small amounts, but it's visible. They are going to do a protein analysis on a sample I collected to see what he's really putting out. A good development, but we're going to reserve judgment until we see what the tests say.

Faith is an important part of recovery. On the other hand, there's this February 2, 2005 article from SportsPickle:

God Denies Any Involvement in T.O. Healing

Faced with questions as to why He would waste time and effort on healing Terrell Owens after the injured wide receiver stated: “spiritually God is healing me,” God stepped forward today and adamantly denied any role in fixing Owens’s ankle.
“I know I rarely come out and speak publicly,” God said in a prepared statement, “but there is no way I’m going to let Terrell Owens pin his healing on Me. I have a lot more important things to do than speed the recovery of a self-centered malcontent like him. Of course, I could have healed him if I wanted to – being that I’m omniscient, omnipotent, and omnipresent – but I have to draw the line somewhere. And it’s definitely drawn well above someone with as little class as T.O.”
Owens is now expected to play in Sunday’s game, coming back several weeks ahead of most medical estimates that set a recuperation time of eight to 10 weeks for such a serious injury; Owens’s injury came just six and one-half weeks ago. Many have even called his recovery a “miracle,” something God took issue with.

Saturday, April 28, 2007

4/27-28 Status Report

Jake had another good day. Every time a child visitor comes (and we had several today), he wants to go in his wheelchair and give them a tour of his hospital highlights. The tour includes the physical therapy room, the play room (with a dedicated Pokemon machine), the two children's gift shops, and the garden. Thankfully, he doesn't remember enough of the ICU to include it on the itinerary. His classmates seem to enjoy pushing his wheelchair around, and they haven't run anybody over - yet.

His eating is good, but we aren't supposed to start the mostly-carbs nutrition plan until after we get the blood pressure and blood sugar in check. This is difficult, because the tour is filled with snack opportunities, and the visiting kids all want snacks at each stop. We do what we can to avoid the Candyman scene from Willy Wonka (the original Anthony Newley one, not the creepy new one).

We think he expelled a small amount of urine this afternoon, but we're trying not to get ahead of ourselves. He had an ultrasound today, which shows that there's very little blood left in his bladder. There's some urine in the bladder, but we don't know if it's fresh or vintage.

The current plan is to be discharged either Tuesday or Wednesday. He probably won't be walking by then, but we'll take him wherever he needs to go for outpatient physical and occupational therapy. We've started the process of moving the vast quantities of stuff out of the hospital room and back to the house. It's the march of the stuffed animals. We're just starting to buy some of the necessaries we now need for the house (blood pressure equipment, professional thermometers, disposable supplies, flavored rum, etc.). Jen's parents have been unbelievably helpful in organizing our evacuation.

As many of you know, our house has been under construction (for a complete renovation) during the last six months. The interior spaces may be finished just in time for our return. The arcade was finished several months ago, but Jen had mentioned that she'd also like the rest of the house to be completed. Frankly, I hadn't noticed.

My limited contribution to all this is to inject humor. Today's Family Guy quote:

Peter Griffin [to Brian after the living room and kitchen burn down]: What the hell did you do?
Brian Griffin: Me? Who the hell buys a novelty fire extinguisher?!
Peter Griffin: I'll tell you who: Someone who cares enough about physical comedy to put his whole family at serious risk.

Friday, April 27, 2007

4/27 Status Report

Jacob had dialysis today. His health is improving, but his blood pressure and blood sugar are still elevated. Our understanding is that we may be discharged next Wednesday (5/2) if the blood levels can be stabilized. He may not be walking by then, but we can do dialysis, physical therapy and occupational therapy on an outpatient basis. We'll see.

One doctor suggested that he may be suffering from something called "thalamic storm", which is a neuro condition related to the strokes. It presents itself through difficulties in perceiving body temperature. He complains of being cold during the night, even through 4 blankets. That may also be a low body weight thing. The other problem caused by this condition is an inability to distinguish between herringbone and tweed. That could be debilitating, because it would substantially limit his future ability to select sports jackets.
We're going to be embarking on on a renal diet for the foreseeable future. Limited intake of sodium, potassium, phosphorous, calcium and liquids. On the other hand, candy is actually encouraged (once the blood sugar is stabilized). Cotton candy and marshmallows for everybody!

We welcome kid visitors this weekend, but call first so we can coordinate!

Thursday, April 26, 2007

4/26-4/27 Status Report

Jen's post is a hard act to follow, but I'll try.

We are starting our fifth week in the hospital. Jake had an excellent day. He had a full set of rehabilitative therapies, and had some friends stop by and visit. I got to watch SpongeBob with him and one of his friends and all three of us were laughing hysterically. I'll always remember that look on his face. He's in good spirits (well, as good as can be expected), and somewhat understands what he's been through and what's happening now. He's excited by the prospect of rehabilitating. We've toured the facility several times in a regular pediatric wheelchair, which is a big step up from touring in a bed.

Tomorrow is a dialysis day, so we're tied up all day. Kid visits would be better timed for the weekend. Kidney status is ditto.

Right now, the leading contender for our Make-A-Wish trip is

4/26 - Guest Blog From Jen

Larry normally does the entries, but tonight it's Jen's turn (kind of like the guest cartoons when Daddy takes a vacation in 'Family Circus') to deliver an inspiring message of hope and resilience:

I love the artichokes that Kim Carver sent via her husband Chris.

[Touching, eh?]

4/26 Status Report

Jake is in good spirits. He won't show those spirits to members of the medical staff, but will show them to family and favored visitors. When the staff comes to examine him, he limits them to yes/no nods. When they leave, he talks freely (but hoarsely).

We start rehabilitation in earnest today. Yesterday they had him "walking" a bit, which is similar to when an infant "cruises" with parental assistance. The neuro-muscular wiring works, but the muscles need a lot of rehab. He'll have several hours of physical therapy and occupational therapy today, plus a little "speech therapy" (which is limited to helping him swallow thin liquids, which is his only nutrition issue). No observable (to me) left/right issues.

No kidney activity yet. For future updates, this will be noted as "ditto" until the kidneys start back up.

One strange development. Accordingly to United Health Care (our insurer), Jake's medical bills are eligible for Medicare coverage, with United providing only secondary coverage. That's news to me, but it could help us avoid the United $2,000,000 lifetime cap. I wonder if we're now eligible for the government cheese. We don't need it, but it is good cheese. Darn good cheese. Kind of a sharp Colby.

A little more hospital humor. This is the memo from hospital administration:

TO: Medical Personnel FROM: Human Resources

It has come to our attention from the emergency room that many EMS narratives have taken a decidedly creative direction lately. Effective immediately, all members are to refrain from using slang and abbreviations to describe patients, such as the following.

Cardiac patients should not be referred to with MUH (messed up heart), PBS (pretty bad shape), PCL (pre-code looking) or HIBGIA (had it before, got it again).

Stroke patients are NOT "Charlie Carrots." Nor are rescuers to use CCFCCP (Coo Coo for Cocoa Puffs) to describe their mental state.

Trauma patients are not FDGB (fall down, go boom), TBC (total body crunch) or "hamburger helper". Similarly, descriptions of a car crash do not have to include phrases like "negative vehicle to vehicle interface" or "terminal deceleration syndrome."

HAZMAT teams are highly trained professionals, not "glow worms."

Persons with altered mental states as a result of drug use are not considered "pharmaceutically gifted."

Gunshot wounds to the head are not "trans-occipital implants."

The homeless are not "urban outdoorsmen", nor is endotracheal intubation referred to as a "PVC Challenge".

And finally, do not refer to recently deceased persons as being "paws up," ART (assuming room temperature), CC (Cancel Christmas), CTD (circling the drain), or NLPR (no long playing records).

I know you will all join me in respecting the cultural diversity of our patients to include their medical orientations in creating proper, narratives and log entries.

Sincerely, Director of Human Resources

Tuesday, April 24, 2007

4/24-4/25 - The New Room

We've physically moved from the ICU to the rehabilitation wing. We haven't actually been dismissed from the care of the ICU medical staff, and haven't yet been reassigned to the rehabilitation medical staff. We're somewhere in between. I think it means he's stable enough to be moved out of ICU, but not yet strong enough to begin the 3+ hours of physical rehabilitation that they have planned.

Wednesday is a dialysis day, so that takes up a big chunk of the day. He doesn't get in-room dialysis anymore, so he'll need hospital transport down to the dialysis unit and transport back. That should take up the bulk of the afternoon. If you are planning to visit, please call first to coordinate.

The rehab wing is really nice. The most noticeable change is how quiet the floor is. No alarms, no beeping, no crying. The rooms are nice too, with six foot couches that double as beds. It's nice to be able to sleep without unfolding anything.

We received the first written pathology report for the kidney biopsy, and I don't understand a single word of it. Each of the words used in the report has a Scrabble value in excess of 100. It doesn't have any smiley faces or gold stars on it, so I presume it's consistent with what we were previously told.

On the entertainment front, we've begun a steady diet of Yu Gi Oh GX and Pokemon Advanced, each of which is the sequel to the previous anime series. It will take me some time to warm up to the new characters (since I haven't seen each episode 10 times yet). It's like getting used to Cousin Oliver on the Brady Bunch.

Since Jacob probably qualifies for the Make a Wish program, Jen and I were discussing where he would like to go if given the choice. Since Pallet Town (Pokemon) and Battle City (Yu Gi Oh) don't actually exist, our predictions are either 1.) whatever the site of the Yu Gi Oh championships is, or 2.) Nickelodeon Suites in Orlando, which we've already been to ad nauseam. Any suggestions? We promised ourselves not to suggest anything self-serving (like the Tour de France).

Room Change - Good News

We've moved out of the ICU into the rehabilitation wing. Jake's now in room 406. The security passes are no longer necessary, although you should probably call before coming up. The telephone extension has now changed from 1455 to 1406.

We spent 23 days in ICU. Now that we've lost all our seniority, I expect that we'll spend our days being hazed by the other kids.

Monday, April 23, 2007

4/23-24 Status Report

Jake had a pretty good day. After dialysis, they removed the venting tube out of one nostril, and later in the day he "accidentally" yanked the feeding tube all the way out of the other nostril. Therefore, we can now see his pretty face unencumbered by tubes. This makes him look much less sick, and the lack of tubes in his throat raises his voice above the whisper level (to somewhere between throaty whimper and hoarse whine).

He's still got some kind of infection which makes him generally uncomfortable. In addition, his tummy is excruciatingly painful. He has a fever, which saps his energy. However, he's well enough that the medical staff has suggested that we have to start parenting again (i.e., saying "no" once in a while and making him comply with bedtime). Since we haven't said "no" for a month, we have to start very slowly so we don't strain a parenting muscle.

Today he demanded pizza, and we complied. He's been able to digest most of the different kinds of solid food, but he cannot digest the formula they tried to put in the feeding tube (which led to him pulling it out).

Unfortunately, people keep stealing our food out of the ICU community refrigerator. It's very difficult to explain to him that he can't have the chocolate ice cream that he knows was delivered at dinner time, and he can't have the leftover pizza he remembers. If you bring us food, please mark the container with "stool sample" in big letters. Maybe that will work.

We still hope to move to the rehabilitation wing this weekend. His various physical therapies are going well, and we're excited for him to soon be able to accept child visitors in the rehabilitation playroom. The patient rooms in the rehabilitation wing are brand new. They have flat screen TVs in each room, although the hospital doesn't have a high definitionTV signal. This means the picture looks even worse than usual. I guess it was a good idea at the time.

No change in the kidney status. We've been advised that some specialists recommend allowing as long as a year for kidney function to resume before attempting a transplant. Our goal is to get him well and strong so we can go home. We presume that he'll be on some form of dialysis regimen for the summer. Even if the kidneys start to kick in tomorrow, we expect that he'll be on supportive dialysis for a while.

It's been a scary day in the ICU, because there are a lot of very sick infants. It reminds you that each day of life is a precious gift. Go hug your kid(s).

4/23 Status Report

We have Monday morning dialysis coming up. He's still got tummy pain and pee pee pain, so they are going to investigate those issues further. They are going to try to "flush" his urinary tract, which should be an interesting experience for him and us. Now that things are less acute, Jen is doing tons of internet research on kidney issues, and will qualify for a masters degree in nephrology by the end of the month.

We have now finished our initial interviews with the Miami-Dade County Department of Health, and they will be doing their e-coli investigation this week. Do we get royalties if this turns into a CSI:Miami episode?

His mind is very sharp, which makes things a little difficult. He remembers every TV show that he's watched in the past week, and doesn't want to watch anything he's already seen, so we have to start getting creative (while Mommy and Daddy frantically work to buy DVD box sets that we don't have).

We hope to get him into the children's rehab room later today for some coloring and workbooks.

Our goal is to move out of the ICU and into the rehabilitation wing by the end of the week. It's much quieter over there, and the rooms are bigger. Once he's out of ICU, I presume the cafeteria people will stop shouting "dead man walking" every time I go through the breakfast line. Of course, they don't let you graduate out of ICU until you pay off your parking tickets.

A little pediatric medical humor:

A boy was assigned a paper on childbirth and asked his parents "how was I born?"
"Well honey ..." said the slightly prudish parent, "the stork brought you to us."
"OH," said the boy. "Well, how did you and daddy get born?" he asked.
"Oh, the stork brought us too."
"Well how were grandpa and grandma born?" he persisted.
"Well darling, the stork brought them too!" said the parent, by now starting to squirm a little in the Lazy Boy recliner.
Several days later, the boy handed in his paper to the teacher who read with confusion the opening sentence:
"This report has been very difficult to write due to the fact that there hasn't been a natural childbirth in my family for three generations."

Sunday, April 22, 2007

4/22 Status Report

Jake is good. This morning he asked to see his friend Patrick, who then came over so quickly that he must have been hanging out in the hospital parking lot. We took Jake outside via the mobile chair, so he saw natural sunlight for the first time in four weeks.

Jen has noted that when I said we are going kosher, that means we are planning to have a kosher home after we get home and the house renovations are finished. In order to avoid withdrawal symptoms, for now that only means no pork. We're not yet at the point where we require that foods be prepared under rabbinical supervision. (Hint- we do love homecooked meals)

Saturday, April 21, 2007

4/21-22 Status Report

Saturday was another good day. Jake is awake and aware. We managed to wear him out through physical and respiratory therapies, and he wears himself out through non-stop chatting (making up for lost time). It's amusing to see him get ornery with the medical staff, and we have to refrain from cracking up when he tells them they're being mean to him. He tried to punch the physical therapist, but I don't think she took it personally.

As a break, we let him play some Nintendo DS. His fingers are pretty beat up after 24 days of pin-prick blood sugar tests, so it's hard for him to effectively play -- but he tries. The joy of watching him smiling and playing the game (with both hands) is indescribable. Who says video games have no societal purpose?

He's eating some solid food -- oatmeal, chicken, chocolate pudding, and pancakes (a special request which required an IHOP run).

He's still peeing blood - which now goes through a catheter. It's tough to watch, and is very painful. Over the next few days we'll probably comb the internet for information about kidney-enhancing foods. In addition, as part of our prayers and "negotiations" over the past few weeks, Jen has decreed that we're going kosher. I hope that chicken matzo ball soup can meet our expectations as a super-food.

4/21 Status Report

Things are good. He slept from 11:00 p.m. until 7:15 a.m. Today's random food cravings are a mixture of yesterday's cravings (chocolate pudding) and new items (lemonade). We had some oatmeal for breakfast. It's counterintuitive, but it's easier for him to eat semi-solid items (bread bits, small pieces of chicken) than it is for him to take straight liquids (clear broth, etc.). They say that's common. His favorite food is the homemade bread that Hindy (Rabbi Rosenberg's wife) baked.

His speech improves each day. The limiting favor is not the brain, but is his ability to muster sufficient lung power to speak in full sentences. His favorite activity is watching mommy play Pokemon Snap and telling her how to find the secrets. If you watch this activity, you can observe Jake dictate strategies that require 10 or 15 specific moves.

Male readers may want to skip to the next paragraph . . . They put the catheter back into his penis, but he's got some pain down there because the blood in his bladder (as previously described) has coagulated and clotted, and the purging of that thick stuff exceeds the design specifications of his standard issue equipment.

Yesterday we found out some "Did I need to know that?" information. It turns out that when Jake went through the difficult period two weeks ago, some of the nursing staff (privately) "didn't think he was going to make it." That's one of the reasons that they are so so doting and so excited to see his daily progress. One of the nurses mentioned this to Jen's mom yesterday, and Jen subsequently confirmed it. I can't decide if I want to know this. It's kind of like when we found out that he tested positive for TTP
two weeks after the symptoms cleared.

Visiting time should be fairly flexible this weekend, but call first (954-987-2020, x. 1455) so we can coordinate between physical therapy, occupational therapy and speech therapy (all of which take place in the room).

Friday, April 20, 2007

Random Uplifting Moments

The running theme of this blog has "Once you make it through 'awful', the merely 'bad' can be easily overcome." Jacob's spirit of perserverence is uplifting, and has carried over (I was going to say 'infected', but we don't use that word around here) to his parents. However, our family is blessed with a world-class network of friends, colleagues and neighbors, so our road is always hopeful.

Having now started our fourth week in the ICU, we have seen how truly lucky we are. There's a little girl named Destiny at the end of the hall. She's one year old, and has spent more time inside of the ICU than out of it. She has serious medical issues. What she doesn't have is any sort of family. We believe she's in foster care. She has no visitors, and has been "adopted" as an informal mascot by the ICU staff. Her radiant smile (and lack of visitors) caught the attention of Chris Carver a few weeks ago, and he mentioned it in an internal Akerman e-mail.

Destiny's plight captured the hearts and minds of the Akerman Fort Lauderdale office , and yesterday I was privileged to help Jeff Lynne deliver to the ICU almost 50 pounds of new clothing and toys for Destiny. The staff has spent the better part of a day dressing her up, and Destiny seems to love it. It was a touching gift, and will light up her life. The ICU staff has asked me to extend their sincere thanks for the gift.

Thursday, April 19, 2007

4/19-4/20 Status Report, and the Kidney Status

Today was a rest day. He spent most of the day in a chair that looks like a dentist's chair, which allowed him to sit up all day and, among other things, watch Momma play Pokemon Snap. He's still tired from recent days and from the morphine.

We are going to try to set up a more traditional schedule with clear divisions between day time and night time. We're shooting for a 7:30 a.m. wake time and an 8:00 p.m. bed time. Govern yourselves accordingly. I'm guessing that the bed times will be a little later due to the logistics of the evening respiratory therapy, but it's a target.

Perspective is an amazing thing. When we came in, we were nervous because they told us that the worst case scenario of the renal failure was a kidney transplant. That freaked us out. Once we went through the brain scares, the stakes and fears changed substantially.

That said, the initial kidney biopsy is not very favorable. They say that his kidney tissues were very damaged by the ordeal. The "official" report won't be done for 2 weeks. The tissue biopsy was on only one of the two kidneys, so its possible that the other one is better. That's uncommon, but not unheard of.

The pediatric nephrologist has said that he's seen kids with very high levels of kidney damage regain some kidney function (although support levels of dialysis were necessary). We are optimistic and thinking positive. If they don't come back (and they will, darn it) , he'll need a kidney transplant. In the words of the nephrologist, the kidney is really the only major organ that has functions which are fully replaceable (i.e., by dialysis or transplant).

The nephrologist thinks yesterday's bladder discharge was all blood and no urine. Nobody insults my son's urine and gets away with it. I'm sure Jake will take his urinary revenge when the doc least expects it. The Silvermans are well known for their vengeful bladders. In any even, the next time that I criticize something as "all blood and no urine", that should be good for a few questioning glances.

Special thanks today to Rabbi and Mrs. Rosenberg, and all the kids at the Sky Lake Chabad Sunday School, for their thoughts and gifts. Our Sky Lake "family" has been incredible, including bringing us a 7 course passover dinner. I would have mentioned that meal on the blog, but the blog didn't come into existence until a week later.

4/19 Status Report

Jake had a more restful night, which means Daddy had a restful night. He slept a few hours (although not enough), and when he did wake up he wanted to watch the brand new Pokemon Ranger and the Temple of the Sea movie. While he watches the movie, I get to doze off in the chair. Since the movie is 90 minutes and the free add-in videos are another 90 minutes, that gives me a potential 3 additional hours of rest.

This restfulness is partially due to the fact that he was in some cramping pain yesterday evening, so they put him on some minute amounts of morphine. They tell us he's off the dependence cycle, so there's no reason not to treat pain when it comes. FYI - when he's stoned, he likes you to touch his toes at all times. That's why I'm typing this with one hand. Feel free to insert your own joke here, but please overcome the urge to post it to the website.

The pain appears to have come from his attempts to purge the blood clots in his bladder. We haven't seen much more urine, and the urinary blood seems to have mostly stopped as well. The docs now think that it's possible that the urine had accumulated in the bladder over the past few days (rather than from current production), but the bladder didn't purge until the blood from the biopsy leak in. To my high school biology mind, even a slow accumulation of urine would indicate some kind of kidney function. In any event, we hope for an initial kidney biopsy reading later today.

Due to all the biopsy complications and dialysis yesterday, they temporarily took him off the feeding tube. He's hungry and thirsty, so they'll put him back on the feeding tube this morning for some easy to digest formula. Until he's eating, please don't mention food in front of him. I inadvertently mentioned pizza in a discussion with somebody, and he chimed in that "pizza is yummy." So true.

Jen's Mom is leaving this afternoon, and my family is coming down tomorrow. That may lead to a temporary doting deficiency, but (like everything else) we'll quickly overcompensate.

Meanwhile, I've had plenty of time to read all the magazines that people have brought. They run the spectrum from People to In Touch to US to The Star to TV Guide. It's not a very wide spectrum, and spans from indigo to violet. On the other hand, I've developed a comprehensive expertise in Reese's divorce, Angelina's adoption and Britney's recovery.

Wednesday, April 18, 2007

4/18 - Exciting (in every sense)

After 48 hours, I finally got to go home and sleep. An hour later, I got a call from our friend Stan to come back to the hospital (which is all well and good, because I went bike riding instead of sleeping. Obsessive compulsiveness is a tough master).

The report was that Jacob was bleeding heavily from his penis. I drove back well above the speed limit, and there was a team of doctors in the room. Apparently Jake had let loose with a stream of blood that went across the room (kind of like the opening credits of The Beverly Hillbillies TV show, minus the "Texas Tea" reference). The sonogram people were in the room, inspecting the kidneys. They decided that it was a small biopsy-related blood leak that had clotted, and that the blood in the bladder was the last of the bleeding.

All of a sudden, he let loose with another blast. However, this time the color of the fluid was much different. He shot blood-tinted urine all over the place! Urine means kidney function, so it looks like the works are operational to some extent. The sonogram reveals a full bladder of a light fluid which appears to be half non-blood (which means it's either urine or Coors Light). We'll see, but the staff is very optimistic. They need to stem the bleeding, and may need to do a procedure tonight to cauterize the leak.

All in all, a very good thing heralded by a bad thing. They gave him a little morphine to ease the pain, but the dose was low enough to (hopefully) avoid the withdrawal merry-go-round.


4/18 - Out of Surgery

He's out of surgery. They did a tummy cat scan, which allowed them to do a precision needle biopsy of the kidney. He was then moved him to a different operating room, and they put in a "tunnel catheter" in a neck vein (although the catheter actually comes out through the upper chest).

They applied local anesthesia, so he shouldn't be knocked out all day. That said, the 48 hours without sleep may keep him asleep for a while. If you would like to visit, it should be in the evening. If this status changes, I'll edit this blog entry to reflect the status.

Today's medical joke, courtesy of the Chaskes family (from a few months ago):

A woman visits the veterinarian with a dead bird, and asks the vet for help. The vet says "I'm sorry lady, but your bird is dead. There's nothing we can do". The owner pleads and pleads, and the vet finally relents and says "I can try something".

The assistant brings in an orange housecat. The housecat walks around the bird, sniffs the bird, and then looks at the vet and nods in disapproval. The vet says "Sorry, it looks hopeless". The owner pleads that there must be something that can be done, and money is no object.

The vet relents again. They bring in a beautiful Labrador Retriever on a leash. The dog walks around the bird, sniffs the bird, and nods in disapproval at the vet.

The vet tells the owner - "It's official. There's nothing that can be done." The owner accepts the prognosis and asks the vet , sadly, "What do I owe you?" The vet replies "$500.00". The owner says "$500.00! That's outrageous! You didn't do anything!". The vet replies "It would have been only $50.00, but you insisted on a cat scan and a lab report."

4/18 - The other effects of methadone withdrawal . . .

It looks like Jake will go 48 hours without appreciable sleep. We were warned by friends of this side effect. We expect that this morning's general anesthesia (at 8:00 a.m.) will knock him out cold and keep him out for the rest of the day. We'll see.

Although his overall strength isn't high, he's now capable of getting ornery or upset. He put up a pretty good fight last night against an unwanted respiratory treatment. The right arm may be at pre-hospital strength, because holding his arm down took real effort.

People have asked about what kind of gifts to bring. He likes pictures of his friends and drawings made by friends. It reminds me of South Park, where the eternal spirit of Moses likes macaroni art.

Tuesday, April 17, 2007

Did I mention you can find anything on E-bay?

Just in case Jake gets nostalgic for the hospital experience, this the same one we use here . . .

Buy 1, get 1 free, but shipping is a killer.

4/17 to 4/18 status report

Jake's mental acuity appears to be at about the same level as when he came in to the hospital. I'm biased, but I thought he was a special kid before, and he still is.

He's so excited to finally have his wits about him, he refuses to go to sleep. He's been awake for 30 straight hours, and really needs a nap. He's just exhausted. He's been at that cranky pre-nap point for hours, but hasn't been able to make the jump. We'd love to give him something to go to sleep, but we are very conservative in the application of narcotics. He's on a feeding tube, so we can't give him the turkey and box-of-wine treatment.

He will undergo general anesthesia tomorrow (Wednesday) so they can do the kidney biopsy and put in the "permanent" chest catheter. We'll be out of the room all morning and potentially part of the afternoon, so we probably can't handle any visitors on Wednesday before 4:00 p.m. If you were going to come tomorrow, please call the room first to find out the status. The initial biopsy reading takes 24 hours, but the official reading takes up to 14 days.

In terms of parental overcompensation, we expect that he will lose his front tooth tomorrow. The normal going rate for such things is $5.00 or so. With much restraint, I think the tooth fairy decided to order a 1,400 card Yu Gi Oh lot on Ebay ($50.00 with shipping). With that kind of 1000% runaway inflation, we may be facing a return to the Gerald Ford administration and gasoline lines.

4/17 Status Report -

A new hope and a new outlook. He's still somewhat sedated from the methadone, but he was awake all day. He can move his arms, legs, hands and feet to varying degrees. The right side is stronger than the left, but both sides work. They took off the leg circulatory pumps, because his leg movement is good. He can make funny faces on request (mostly of the 'stick out the tongue and stretch the lips' variety). All of those things are sluggish (except the funny faces) and will need therapy, but the wiring is intact.

He can speak one or two words at a time. It's a bit slurred, but the thoughts are cogent. For example, his favorite candy is "gushers", he recognizes and identifies animals, and he can differentiate Pokemon Ranger from regular Pokemon. Of course, if Pokemon identification was an accepted neurological test, most parents would fail (although Jen would qualify for Einstein status).

His longest statement today was "Get me some candy!" Our friend Candace showed up one minute later. Sort of funny.

It seems as if he got taller during this ordeal. He looks pale and skinny, like Kate Moss minus the coke habit.

They plan on doing the kidney biopsy on Wednesday. Still no kidney function. They took out his groin catheters, and they plan on putting in a new chest catheter when they sedate him for the biopsy. He's been on pedialyte via feeding tube all day, and tomorrow they are switching him to an easy-to-digest formula. He gets popsicles as a special treats.

Thank you all for all the kind words and encouragement! The support of the Country Day community continues to be overwhelming. We've also had an outpouring of support from the Temple Sinai community (word seems to have spread in the last day or so) , which is a reminder of the strong affection that we have for Jake's former teachers and classmates. Continued thanks also go to our friends at Akerman, who have gone above and beyond.

Monday, April 16, 2007

4/16 morning report

He woke up, he's groggy, but he's more responsive. He can squeeze my hand when requested. He can talk a little - mumbly, but music nonetheless. "What kind of DVD should I buy? Yu-Gi-Oh." He answers on a 4 second delay (kind of like a radio shock jock). Good stuff. He's mostly back to where he was last week.

He has dialysis this morning, so any pre-noon visitors may have to wait with us in the waiting room. We'll see whether that makes him more or less lucid. Probably less.

This afternoon, we're scheduled for a grandma exchange. Two grandmas enter, one grandma goes back home. (Shades of "Mad Max, Beyond the Thunderdome").

FYI - the longer status reports are written at midnight, which explains a lot.

Sunday, April 15, 2007

4/16 Status Report- "He had a hat"

Everything is pretty much the same as yesterday, except he's has some occasional spells of agonizing discomfort. Since we just weaned him off of opiates, I don't know what they'll use as a painkiller going forward. I've been reading him some of my antitrust briefs, but that just transforms the pain to painful sleep. He's got some mouth bleeding due to when he bit his tongue a few days ago, as well as from some loose teeth. He's got some moments of limited lucidity and movement (I think), but his lack of strength makes them very short. They gave him his last methadone dose, so now we need to sit and wait (sounds familiar). Dialysis days will be Monday, Wednesday and Friday until renal function begins.

Now a story . . .

A grandmother takes her young grandchild to the beach. Suddenly and without warning, a massive wave comes and washes the grandson out to sea. The grandmother looks to the heavens, and with great faith she believes that her grandson will be OK. Suddenly another wave comes and washes her grandson back to shore, safe and sound. The grandmother looks up to the heavens and proclaims - "He had a hat . . . "

Having loads of time, a mind in need of distraction, and a dearth of reading material, I found myself reading a blog dissecting the Book of Job.
From high school and college, most of us are vaguely familiar with Job and his trials. However, the actual story and text has a decidedly "old world" feel. Among the ordeals that Job endured were the deaths of all ten of his children in a collapsed tent accident.

At the end, Job's faith is rewarded by, among other things, giving him another 10 children. Call me skeptical, but one would think that the first ten children would be somewhat underwhelmed by this "happy ending".

I want my hat back - in the same condition that he started in. I have no doubt in Jacob's unquestioning faith - 3 years of Temple Sinai preschool and a few months of Chabbad sunday school will do that for a kid. For mommy and daddy, waiting for the drugs to wear off and the body to recharge is an enormous test of faith.

Brief Summary of What Happened

As more and more people have called, emailed, and otherwise sent their thoughts and prayers, I thought I should briefly summarize what happened. Jacob developed bloody diarrhea on March 25. We brought him to the emergency room on March 27, based on a fear of dehydration. He was admitted on March 28. On April 1, his renal function stopped, and he was transferred to ICU on April 2.

The stool cultures from his initial admission tested positive for the E-coli(157) bacteria. The test takes a few days for the cultures to grow, and didn't come back until April 2.

From the E-coli infection, Jake developed 2 serious conditions known as HUS and TTP. Those conditions led to a host of complications, including the kidney failure and a series of "minor" strokes.

We don't know where the E-coli came from. As most of our friends and family know, Jacob doesn't each much meat. If the E-coli came from food, it was probably from some kind of organic produce (although the CDC and the Miami-Dade Department of Health will be investigating to find the cause). As far as we know, Jake is the only E-coli case in South Florida.

4/15 Status Report

Jacob had a pretty quiet night. He had his last methadone treatment yesterday afternoon, and slept pretty much through the night. For a hospital patient, that means that he was able to fall asleep after the constant interruptions that take place each hour (blood taking, respiratory therapy, medications given through several orifices, changing of the "hospital pants", position adjustments, etc.) Unlike the previous few days, he seems to be having less painful tremor side effects from the drugs. He's just plain zonked now.

When he's awake, he's still non-responsive. Our hope is that the drug effects wear off soon --before Mommy and Daddy lose their minds in a sea of self-doubt.

On the other hand, he looks much better than previously. He's got some color and his breathing sounds pretty. No kidney action yet. He's got a hemodialysis session scheduled for tomorrow. Through all of this, he's got at least one loose tooth. I presume that once this is all over, the tooth fairy's going rate will increase exponentially (just like all of the other traps that his overcompensating parents will fall into).

We'd like him to rest as long as possible to recharge his batteries, so any visits today should be in the afternoon (4:00p.m. to 9:00p.m.).

Saturday, April 14, 2007

4/14 Status Report

The opiate withdrawal is hard on the little guy. He's been barely conscious, but is in some pain. It's pretty much classic "zombie" status, except he doesn't appear to have a taste for human flesh.

When he wakes up, he gurgles in a load moan. He stiffens up his arms and legs (so we know they're still connected, etc.) but isn't responsive. Given what we've been through, it makes us nervous, but we have to be patient. His left side is still appreciably weaker than his right.

Other biological levels are stable. No kidney function yet. Lungs seems good. BUN levels are elevated, so they have to figure out what's going on there. We're going to try some new nutritional things to see if we can get his tummy working.

It's very hard seeing your child in pain but not being able to console him. The next time you have a headache and your kids are yapping in the back seat about some triviality and you wish they'd just shut for a while (you can admit it happens) , just remember what they were like as babies when they had pain but couldn't tell you what it was. That makes the headache go away. On the other hand, there's no known antidote for having to listen to Radio Disney.

For the next few days, it will be hard to have visitors before 4:00 p.m. Both Jen and I are here from 4:00p.m. through 9:00p.m, so that's the best time.

Friday, April 13, 2007

Top 10 Observations of the Pediatric ICU

After 2 weeks on the Pediatric ICU floor, we've made some observations that may help others when facing these challenges:

1. You don't have to join one of the hospital gangs to survive. I wish we knew this earlier. Anyway - Crips forever!

2. When you initially register in the emergency room, the extended warranty is probably a worthwhile expense.

3. Don't try to charge your cell phone with the defibrillator. However, it makes great English Muffins.

4. When you say to yourself "Boy, I love this clear broth. I'll never get tired of it", you're wrong (twice).

5. Once you sleep in a bedside chair for a few days, Pilates is no longer necessary.

6. After 14 continuous days, Spongebob is still funny. On the other hand, the fact that they run the same ESPN SportsCenter from 12:00 midnight through 6:00 a.m. is mentally corrosive.

7. You don't have to personally taste all of the medications they give your child.

8. Did you know that all those bionic accessories on the Six Million Dollar Man really don't exist (at least according to the staff)? Given how much we're spending, I thought we could at least get a bionic eye or something.

9. Practical jokes are strongly discouraged in the ICU. I think this was part of the Geneva Convention.

10. Since everything you do, see, and hear for your child is very important, you have to keep your spirits up to stay sane. Don't take yourself too seriously.

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.

Wednesday, April 11, 2007

Jacob's 4/10 status report

Thank you all for your continued support! Jacob has the prayers of so many people and so many faiths behind him.

Last night we had a little failure of faith. Maybe one we lost the support of one of the more obscure religions (I knew I didn't trust those druids). For the last few days following thursday's brain MRI, Jacob has been unable to move his left arm or left leg. The neurologist hadn't been around for a few days, and his partner handled the rounds at 10:00 pm last night. Her consult strongly implied that Jacob has serious neurological deficiences. During her examination, Jacob was knocked out cold and was unable to open his eyes or respond in any way. I explained that he (1) had 8 mgs of morphine in his system yesterday, (2) that he's on dialysis and a respirator and is therefore kind of weak, and (3) that he's been lucid on the limited occasions when he wakes up. No matter -- she decided there were very serious long term issues. To comfort us, she told us that she had a patient just like this and "he got better. He's not very smart, and is in special ed., but he can walk".

The next 10 hours were, objectively, the worst 10 hours of my life (not that this is about me...) Since he had his last morphine at 5:30 p.m, I figured that he'd wake up any second and recognize me and squeeze my hand (even if just from his right side) and I'd know I wasn't crazy. We cut off the morphine and waited. And Waited. And Waited. (At this point you can go get a snack. I'll wait . . )

He didn't wake up until 7:45 am. When he did, he opened his eyes, mouthed "I want mommy. My tummy hurts", and we watched Pokemon for 30 minutes. The pain was so much that we put him back on morphine. Until he fell asleep we read to him (he picked the book). I called my wife, called my mom, threw up, and went on with my day.

He just came back from MRI and they said that his brain is much improved since last thursday. He squeezed the doctor's hand with both his left hand and his right hand. I crawled out of my resting place (in the fetal position under the desk) and started typing.

His kidney function isn't back yet. They are trying to take off the respirator some time tomorrow (he doesn't really need it now). White blood cell count is down to 39,000. Silly little details.

We'll keep you posted. Meanwhile, we're going to go make up with the druids.

Sunday, April 8, 2007

Jacob's 4/7 Status Report

Today's status report is a great improvement over the past few days. The e-coli virus has left his body, and now we need to clean up the aftermath. He's still on continuous dialysis, but kidney function appears to be slowly recovering (he's making minute amounts of urine, which is a start). BUN levels are now within normal range. He's connected to the respirator and can't speak, but it hopefully allows him to recover some strength. When they put the breathing tube in, they discovered a staph infection in his lungs, so we're very thankful they put the tube in. He's sleeping 23+ hours a day, which is a good thing.

Pancreatic function is improving, and they've cut down the insulin. Blood pressure is back to reasonable levels (no more 49/28 craziness). White blood cell count is 55,000, down from as high as 120,000 2 days ago.

As for the big issue - he suffered a series of 6 or 7 minor strokes (which appear as symmetrical deep brain infarctions on the MRI), but no bleeding or edemas were detected. The neurologist says there are no observed deficits in brain function (i.e. - he can follow spoken commands and flex his body parts).

We hope that he continues to rest in the upcoming days and slowly regains his strength. No rush.

Thank you all for the incredible support and prayers! We've turned off the phone in the room because it wakes him up, but we're always there. Visits are permitted in the afternoon, but please do not bring children (pediatric ICU is a scary place). I have my blackberry, and am always available by email at

P.S.. -- The good news is that numerous blood tests reveal very high midichlorian levels, so his future career is clear.

Tuesday, April 3, 2007

ICU rules and regulations

Visiting hours are actually 24 hours a day. Really. However, please don't feel obligated to test this. Larry does the night shift, and goes home from 10:00 a.m. until 3:00p.m. Jen does the day shift, and goes back to the "Conine Clubhouse" from 12:00 until 10:00 a.m.

Only 2 visitors are allowed in the room at any time.

No children! Child visitors are actually allowed by the hospital , but you do not want your child to see the inside of a pediatric ICU. Trust me. There is a children's waiting area with video games and other cool stuff, but the kids have to be supervised by a parent.