May 31/June 1 Status Report

Jake is home and doing well. His mental and physical status is excellent (except for the kidney thing). They've slightly modified the medication schedule, so it's a little easier. They've eliminated (for now) the yucky 8 tablespoons per day medicine for potassium reduction. I think he's curently on a regimine of 8 medications.

He has dialysis Friday, and we'll see whether the new catheter improves the clearance process.

So Far So Good

The surgery seems to have gone fine. He's sleeping off the anethesia. In 90 minutes they'll start his dialysis.

5/30 Status Report from Surgery

A List of Things You Don't Want to Hear During Surgery:

Oops!
Has anyone seen my watch?
Come back with that! Bad Dog!
Wait a minute, if this is his spleen, then what's that?
Hand me that...uh...that uh.....thingy
What do you mean he wasn't in for a sex change!
Damn, there go the lights again...
Everybody stand back! I lost my contact lens!
Well folks, this will be an experiment for all of us.
What do you mean, he's not insured?
Let's hurry, I don't want to miss "Bay Watch"
What do you mean "You want a divorce"!
FIRE! FIRE! Everyone get out!

He's scheduled to go under general anesthesia in a few minutes. He's asleep, which is good because that means he doesn't realize that he hasn't had anything to eat or drink today (which is a pre-anesthesia requirement). He'll have the catheter replaced as soon as the anesthesia takes effect. Once the procedure is finished, they'll wait for him to wake up (so they know that things are OK), and then transport him back to the pediatric ambulatory wing for 4 hours of dialysis. The hope and expectation is that his dialysis sessions will be more effective with a fresh catheter.

5/29 Status Report

Yesterday's dialysis went as smoothly as it ever does. We had some friends over for a late dinner and Jake was in good spirits. Today he's back at the hospital getting a neuro-optical checkout (there's a word for that specialty, but I can't spell it), then it's time for more occupational therapy. He doesn't really know about the plan for tomorrow's catheter replacement surgery.

The current party game of choice when people come over (other than Wii) is SingStar for PS2. It's a Karaoke game with current songs, and it doesn't require hand-eye coordination. We highly recommend it.

P.S. - Happy birthday Zoe!

5/28 - Happy Memorial Day

We're back to a hospital-based blog this morning, because I got to accompany him and Mommy to dialysis today. There seems to be a holiday kind of vibe at the hospital, because the main facilities seem pretty empty. On the other hand, the pediatric dialysis wing seems the same, because none of the regulars are missing. I don't thing you can "take a day off" from a dialysis schedule.

We get the parent's price at breakfast in the cafeteria, even though we don't have wristbands. It's a little like Cheers, except we wish everybody hadn't had time to learn our names.

We had some inconvenience yesterday, because his catheter dressing came off and Jen had to take him to the emergency room to get it changed. She probably could have done it herself, but we didn't have a sterile kit handy. Thankfully, a friend helped expedite that process, so the day wasn't lost. After dialysis is done today, we're going to stop by the pharmacy and try to get some supplies for our new do-it-yourself home trauma center. Since Miami is notorious for garage-based back-alley dental offices, I don't think an amateur trauma center is a big stretch.

Jake's in pretty good spirits. He got to spend some time with friends this weekend, and is holding his own. When we're done with dialysis I had promised I'd take him to the Swap Shop to look for some knock-off Yu-Gi-Oh cards. (The poor translations amuse him.)

I brought my track bike to the hospital with a thought that I could sneak off to the velodrome for an hour (the Florida State championship is next month and I'm woefully out of shape), but it rained just enough this morning to make it too dangerous. I'll give it a shot anyway. If I end up with a Daddy recuperation blog, it's my own fault.

5/26-5/27 Status Report

We went to the end of tee ball season trophy ceremony, and Jake got a game ball award for being the "most courageous player." I am normally skeptical of the dilution of "the trophy" (when I was a kid you had to win to get a trophy, but we also walked to school barefoot in the snow . . . ) but this was very nice.

He's improving mentally and physically. We had OT today, and we continue to work on field of vision issues. He's a little better each day. His sense of humor is strong. He really liked Shrek 3 last night. It was good to get out, although going to the movies without popcorn is tough.

Unfortunately, he was to be admitted to the hospital next Wednesday to have his catheter repaired or replaced. He'll be put under general anesthesia, and we really hope to avoid an overnight stay.

5/24-5/25 Status Report

We still don't know what to do for a Make A Wish Trip, but we know how we'd want to travel . . .

Today was the last day of school. Our job is to get him ready for first grade over the summer. Friday is a dialysis day, and they are scheduled to do some blood tests to see how kidney function is going.

5/23 - School visit

For those of you who have been following along but haven't ever seen Jake, here he is at school. He had fun at the class party.

P.S. - As you can see, we haven't made it for a haircut yet.

5/22-5/23 Status Report

Jen came back from a big shop at Whole Foods Market, in a vain attempt to find something healthy that is acceptable to his majesty. $300+ for about three bags of food. I could fill a Chevy Suburban with Publix groceries for $300.00. Whatever.

Remember, this whole ordeal probably began with some kind of organic vegetable. We seem to have found some new potential staple foods (mac and soy "cheese", lemon juice based lemonade, celery, modified sugar cookies) but we need to get some weight on those bones.

He has dialysis tomorrow, and then we hope to bring him to his Kindergarten end-of-year party at 1:00.

The doc estimates his current kidney function at 10% to 20%. He's got a bunch of OT and PT issues to resolve, but at least he's in good spirits.

5/22 Status Report

Jake had a good night and woke up in a good mood. Some of that mood may be due to the fact that he slept 11 hours. He has his first outpatient occupational therapy session at 10:00 this morning. After that I may take him for his first haircut in about 4 months. He's got an early Beatles moptop.

We skipped visiting school this morning because he slept late, but we'll go tomorrow.

5/21 - Day 5+ - Status Report

Jacob had a good weekend. He's still "cloudy" in terms of reaction time and speech, but he's generally in good spirits. We have dialysis Monday, Wednesday and Friday mornings, and he has occupational and physical therapy some afternoons.

There's no question that he got taller (almost an inch and a half) while he was bedridden. Since also he lost weight during the process, he's now a very skinny guy. In addition to the balance issues caused by the brain lesions, the extra inch of leg length makes him walk awkwardly.

He's still a picky eater. It's kind of hard to meet his fickle food demands while sticking to a low sodium, low potassium, low phosphorus diet, but we're trying. Right now the occasional microwavable White Castle hamburger seems to fit the bill. A little high in sodium, but not too bad as part of a balanced diet.

This is the last week of Kindergarten. We're going to try to stop by the classroom tomorrow morning for a bit, and we hope to stop by the class year-end party on Wednesday afternoon.

The Kidney - by Theo. LeSieg (sorta)

The kidneys control “renal function”
Well, what does that really mean?
Now that Jake has kidney malfunction,
This is what we can glean:

The kidneys filter “urea”
and other kinds of waste
Now that you get the idea
Of the kinds of challenges we face

When the kidneys are broken
the fluids can’t get out.
Thus it remains unspoken
We face a urine drought.

The kidneys also filter
other kinds of things
If not, he’ll get off kilter
With all the trouble that brings

The kidney limits phosphorus,
and also potassium.
A very busy organ process
behind the peretoneum

As long as we watch the food intakes
and nothing goes amiss,
we can avoid most electrolyte mistakes
and have an easy dialysis

He’s on the low sodium diet,
to keep the pressure tolled.
Because the kidneys remain too quiet,
this needs to be controlled.

“Renin” is what makes the pressure even
But his kidneys put too much out
While the docs we do believe in,
this issue injected some doubt.

Now that he’s home,
and can do everything that he missed,
the medical journals we do comb,
and await the transplant list.

5/19 - Day +3

Jake got to go visit his friends Aaron and Lane next door this afternoon, and his friend Remy came by yesterday. He's in good spirits. He's still a little foggy from the drugs and swelling, but the substance is all there. Remy's parents brought a good bottle of red wine, so mommy and daddy are a touch foggy too.

We're still learning what feeding techniques work best. He threw up this morning, which we attribute to taking in too much liquid too quickly. We have to be conservative regarding no-no minerals (sodium, potassium, phosphorus) in foods and liquids on weekends, because there's an extra day between dialysis sessions. We're told that adults on hemodialysis have as much as 12 pounds of liquid removed on Monday dialysis sessions if they've had a "big weekend".

Now that we're back to "normalcy" - such that it is -- Mommy got to try out the latest edition of Singstar-Pop, which is a Karaoke game for Playstation 2. It's therapeutic. On the other hand, listening to Daddy sing is antiseptic.

5/18- Day 2 - A new routine

Today is our first day of outpatient dialysis. He has dialysis every Monday, Wednesday and Friday at 8:00 a.m. That schedule will probably continue until the end of the summer, and then we'll reevaluate.

This morning he was so tired that he stayed sound asleep from the bed through the car trip through the hook up to the dialysis machine. He was sleeping so deeply that it was kind of scary, but we have to remember that he stayed up late and had a big day yesterday. I guess it's better than being tired and cranky . . .

We don't know how he'll react to going back to the hospital as an outpatient. He's been fairly stoic about medical treatment - except his medications, which he hates. He had some digestion problems yesterday, so they've added Tums to every meal and snack. There's no problem getting him to take those, because the tablets come in tropical fruit and berry flavors. Chalky, but yummy.

The house is a disaster area due to the construction. If you visit, don't bring stuff (except food, which is always good), because we don't have any room. He already has every toy ever made.

On TV they announced the introduction of a new series of Yu Gi Oh cards, which will provide bribe-fodder for a little while. Other than a visit to the trading card store, we'll probably sit tight at home for a few days. We'd like to take him to the movies, but 1) we're not over the germ thing just yet, and 2) I doubt they have the low sodium popcorn he eats. We still have 20 hours of Yu Gi Oh DVDs to watch, and Jen has 7 weeks of Boston Legal, Gray's Anatomy and Law & Order to catch up with. As for me, I can now watch the Giro (go Liquigas!) on the internet and the Floyd Landis trial.

5/17 Status Report - Home is where the house is

We're home. He's much happier here, and his greatly increased physical capacity is a reflection of that. He's walking around and looking at all the renovations and developments. He has fed all of his Club Penguin puffles, and vaguely remembers that he has received a bunch of gifts that he hasn't played with yet.

He's still subdued, which is probably a function of the combination of 11 different medications and the brain lesions. However, he seems happy and optimistic.

I have to sign off now, because he remembers that he's been banking his allowance for 7 weeks and he now wants to go on Ebay and spend that money. I had seen a poem that talks about how much simpler life was at age six, but very few of those parables still apply.

5/16 Status Report - Time for Tubby bye-bye!

We've been approved for discharge, but we're awaiting the "final paperwork" so we can say bye bye to the inpatient lifestyle.

We've been waiting for that paperwork for over three hours. I've never understood why hospitals consistently ruin their goodwill by delaying and botching the discharge process.

I had not commented on the passing of Reverend Jerry Falwell, but I really like this quote from former Teletubby Tinky Winky:

Asked about Falwell's death, Winky turns serious and chooses his words carefully.

"I'm not going to pretend I'm sadder than I am," he says. "There were late nights during the dark times when I wished to hear news like this. I'd be lying if I denied that. I don't feel that way anymore. I like to think I've grown over the years, gotten past all that pain.

"But at the end of the day, I'm not terribly sad, and I think a lot of people feel the same way. Jerry Falwell was a divisive person, a hateful person, and what I've tried to be all about, in the Teletubbies days and since then, has been love. I've got to keep it that way. I don't want anybody feeling good about it when it's my time for Tubby bye-bye."

5/16 Status Report

Jacob is in hemodialysis this afternoon, and won't be done until 6:00 p.m. Once hemodialysis is finished, they'll let us know whether he's discharged today.

He's kept his food down so far. The tummy is still bothering him, but not as bad as yesterday.

He's a little frustrated with his (presumably temporary) lack of coordination and lack of concentration issues, but he knows he wants to go home. Our housekeeper and construction workers have done an incredible job of making the house more liveable for his impending arrival.

5/15 - Day 47 - So we're not going home today . . .

He's having trouble keeping food down, so they won't discharge us until that's resolved. Vital signs seem good, but he hasn't eaten anything (well, not for very long). Since tomorrow is a dialysis day, we probably won't go home until late, late afternoon. It's a good thing we didn't check out of the Conine Clubhouse yet.

I went downstairs to get a copy of the bill, but they said it won't be ready for another two weeks.

5/14-5/15 - Almost at stage 2 . . .

We go home tomorrow. We've got a rental wheelchair, bought our computerized test equipment, and ordered our bland tasting food. We can fully replicate the hospital experience at home.

The ongoing renovations to the interior of the house are still in full swing, so we'll be hiding in the Mommy and Daddy bedroom until everything's done. We're guessing three more weeks until completion (although work started last October, so take the schedule with a big grain of salt).

Hmmm - restricted to one room for weeks at a time? We're used to that. Until the house is done, it will be very hard to entertain visitors at the house.

We'll be doing hemodialysis at 8:00a.m. every Monday, Wednesday and Friday for at least the next 10 weeks. We don't have a schedule for physical therapy and occupational therapy yet.

5/14 Morning Report, and more medical humor

Everything seems on track for discharge. He wants to have Yu Gi Oh duels all day. Oh boy. We have to get those brain muscles (ours, not his) back in shape.

Here are some entries on patient charts (at Kenyatta Hospital, not Joe DiMaggio):

1. She has no rigours or shaking chills, but her husband states she was very hot in bed last night.

2. Patient has chest pain if she lies on her left side for over a year.

3. On the second day the knee was better, and on the third day it disappeared.
4. The patient is tearful and crying constantly.She also appears to be depressed
5. The patient has been depressed since she began seeing me in 1993.
6. Discharge status:Alive but without my permission.
7. Healthy appearing decrepit 69 year old male, mentally alert but forgetful.
8. The patient refused autopsy.
9. The patient has no previous history of suicides.
10. Patient has left white blood cells at another hospital.
11. Patient's medical history has been remarkably insignificant with only a 40 pound weight gain in the past three days.
12. Patient had waffles for breakfast and anorexia for lunch.
13. She is numb from her toes down.
14. While in ER she was examined, x-rated and sent home.
15. The skin was moist and dry.
16. Occasional, constant infrequent headaches.
17. Patient was alert and unresponsive.
18. Rectal examination revealed a normal size thyroid .(!!)
19. She stated that she had been constipated for most of her life,until she got a divorce.
20. I saw your patient today, who is still under our car for physical therapy.
21. Both breasts are equal and reactive to light and accommodation.
22. Examination of genitalia reveals that he is circus sized.
23. The lab test indicated abnormal over function.
24. The patient was to have a bowel resection. However, he took a job as a stockbroker instead.
25. Skin: somewhat pale but present.
26. The pelvic exam will be done later on the floor.
27. Patient was seen in consultation by Dr. Wangui, who felt we should sit on the abdomen and I agree.
28. Large brown stool ambulating in the hall.
29. Patient has two teenage children, but no other abnormalities.

5/13-5/14 Status Report - Back to School (almost)

We're making preparations to go home on Tuesday. Home is a relative term, because he still comes back to the hospital three times a week for four hours worth of hemodialysis. Even when he doesn't have dialysis, he still has physical therapy and occupational therapy. It's unclear where and when those therapies will be provided.

It will be good for him to be home. Club Penguin is blocked on the hospital internet service, and he hasn't fed his puffles for 45 days (you have to be a parent to understand). He reminds me of this fact several times a day.

Jake's Kindergarten ends on May 25, so we're going to do what we can to bring him by the classroom as soon as practicable (maybe Thursday)? He really misses school, especially because he thinks he can get a cupcake birthday party in class.

Monday is a dialysis day, so we're tied up all day.

5/13 - Status Report

He's in good spirits. Vital signs are good. He's a little quiet, but seems happy and contented. The staff is getting us ready for a Tuesday discharge. They think he looks much better. We need to avoid any hospital-bourne illnesses between now and then.

We had a kid visitor yesterday (Gabriella), and we did what we always do - give the tour. The kid's tour now has a heavy focus on the different kinds of shiny rocks in the Serenity Garden. It's apparently fascinating for the eight and under set.

Happy Mothers Day

P.S. - Nothing expresses love better than a Mother's Day e-card from the Federal Trade Commission (http://www.ftc.gov/mom). (You can decline the offer to install the Japanese language pack when you click on the link)

5/12- News Flash - Back to the "hotel"

We're back in room 406 in the rehabilitation wing- the "hotel" (as Jake had called it). The presidential suite at Ritz it ain't - but it's probably the same price. Our phone extension is back to 1406.

They've told us that our target date for discharge out of the hospital is Tuesday if everything goes well. Vital signs are good today. So far, so good.

Special thanks to Candace for the Carvel birthday cake and "cookie cake." We're carbo loading for discharge day.

P.S. - Did I mention my brother turned 37? I did? OK - just checking.

5/11 -Day 43 - Our plan backfires

His physical health was pretty good today. He's very ornery, but has fleeting moments of cuteness. The pediatric nephrologist thinks we have at least 4 or 5 more hospital days left. He clotted up the dialysis machine, so that process took longer than usual.

Our previous plan was to stay in the ICU as long as possible before moving to the cushy rehabilitation rooms. As a result of our delays, all the nice rehabilitation rooms are now occupied until further notice. It looks like we'll stay in our ICU room another week, but we're no longer considered "ICU status."

When I came back to the office today, I picked up some more birthday presents that my colleagues dropped off. Thank you to the Chaskes family for the Wedkidz frog, which will get a lot of use tonight (especially since Club Penguin is blocked on the hospital internet server). A special thanks to Jim Miller and family for a beautiful card and message, which was accompanied by stacks of Yu Gi Oh cards and a neat deck box.

P.S. - Happy 37th birthday today to my brother Noel. That's right, 37 years old. An age when most professional athletes have already retired, and the remaining few are considered "grizzled veterans". An age when you may say to yourself - "gee, this minivan has pretty good pickup on the highway". An age when you shop for Dockers, "with a skootch more room in the waistband."

Thank you for the overwhelming generosity . . .

We had Jacob's party today. He was pleased. Stoic, but pleased. For the first time, he was willing to make eye contact with the members of the medical staff who joined us for lunch.

The most surprising development was when he decided to stand up and walk around the room so he could sit in Mommy's lap. It was a complete surprise to us and to the physical therapist (who was sitting next to him). They don't do unsupported walking in PT yet, because his balance is still iffy due to the brain swelling.

His blood pressure was very good today. If he stays controlled after dialysis tomorrow, we're a sure bet to get transferred - somewhere. There's a waiting list for pediatric ICU rooms, but they can't move us out yet because the rest of the pediatric wing is also completely full.

Occupational therapy is working with him on the neuro issues, which are improving a little bit each day. We'll be in dialysis tomorrow, so we'll be tied up continuously (mostly) from 9:00 a.m. through 5:15 p.m.

One sad note - little Destiny is back in the ICU again.

Thank you all for the incredible gifts today. We're overwhelmed. Among the many gifts included:

A Pokemon basket, including the new Pokemon Diamond video game, from the Orensteins;
Every Yu Gi Oh DVD ever released (17 DVDs, in English) from Noel and Dita;
Rare Shel Silverstein books from Stan and Ronnie;
Color by numbers art pencil set and books from Gowie;
An indoor remote control helicopter (very cool!) from the Jockers family;
A three year preschool retrospective poster with candy attachments from Miss Vilma and Miss Marla and Miss Elena and the other teachers at Temple Sinai of North Dade School;
Cookies from Miss Jenny and Miss Helen;
Card games and Legos from Miss Mila and Miss Helen;
SpongeBob and Puffles artwork, a Cranium game and a SpongeBob book from the Dillworths;
Dinosaur stickers from Miss Beverly;
A candy extravaganza basket from Mary and Carl;
A gift book, individually drawn get well cards and a talking Pikachu from Mrs. Holsing, Mrs. V and the kindergarten class;
Individually drawn get well cards from the Covington, Georgia Presbyterian School;
A toy basket from Sunny the nutritionist;
A toy car and candy from the hospital volunteer staff;
Yu Gi Oh tapes from the rehab department;
A cool storybook (in which the main characters look just like Jake) from the Rabbi and Rebbetzen;
Homemade get well cards and Gushers from the Bergers;
Spiderman toys and Yu Gi Oh cards from Will, Ivan and Jen at Somer & Associates;
A Marvel Heroes Pog game from the Child Life staff;
A home made treasure box from the Battistas;
A 2007 shorts shirt and a Pokemon cards set from Lily and Ivan;
A muscial Shrek card from the "girls" at the Conine Clubhouse; and
Cool DVDs from the Trinz family (as well as dinner last night);

and tons of other stuff that has come in over the past 42 days. We received so many things that if I failed to list something here I'll make sure to include it tomorrow. It may be included in some sort of obscure code that nobody understands, but it will be included. Mom got him a "few" things too. It's a good thing we bought the large SUV.

5/10- Jake's 7th birthday

Jacob realized last last night that he can have three different birthday parties - a hospital party, a party at school, and a big party at home. This made him very happy. We may need to accelerate the healing process to get a school party done before the end of the school year, but we'll see. His Kindergarten teacher, Mrs. Holsing, is bringing over some cards that his classmates made, so he'll enjoy that.

Our "party" will probably be in the conference room in the playroom. I'm sure Jen went overboard on the food, like we always do. She spent a few hours last night wrapping his presents, which didn't seem necessary to me. Whatever. I think we now have every toy ever made. When I was a boy, we played with a box and a piece of string, and darn it, we were thankful. No, wait . . . I seem to recall having every toy ever made. Johnny Lightning cars. Matchbox cars. Lionel trains. Tyco cars and trains. Super Tinkertoys. Pong. Atari 2600 and Atari 800. Never mind.

In honor of his birthday, I brought him his favorite foods last night - cole slaw and pickles from Katz' delicatessen. They are a little high in sodium, so we had to go bland the rest of the day to fit them in. I guess he has yiddish (or yodish, as per last night's blog) tastes.

He's on his usual cycle. His numbers at night look great, and the blood pressure creeps up during the day. He's on a new cycle of medications, so we need to stay the course for 4 or 5 days to get to a "steady state", and see how he does on that. We'll probably move to the regular pediatric floor in a day or two, but will continue under the supervision of the ICU docs.

The blood pressure issues appear to be a general kidney disease issue (related to renin output), and don't appear to be related to specific dialysis treatments. Therefore, the current track is to continue hemodialysis treatments monday/wednesday/friday and to try to convert to peridialysis at the end of the summer.

5/9 - A quick update

The blood pressure is strong in him. Fix it they cannot. Succeed they must, because there is no "try."

Excited for tomorrow's in-room birthday party he is, hmmm.

5/8-5/9 Status Report - More Calvin and Hobbes . . .

He's doing well, but they are still keeping a very close eye on the blood pressure . If the blood pressure stays under control, we may get moved back to the regular pediatric floor in the very near future because they are running out of space in the ICU for critical patients.

Blood pressure is calm at night (105 to 115), but during the day it elevates to 128 to 145 even with blood pressure medication. They'd like it under 120. It's unlikely that these levels of blood pressure would lead directly to additional brain lesions, but the easiest way to avoid acutely high blood pressure it to stop it before it gets acutely high.

He looks good, with rosy cheeks and some laughing. He's still got some fine motor and occupational therapy challenges (like difficulty with some finger movements), but those will hopefully resolve through therapy and when the brain lesions heal.

Finally - the previous blog was written without using the letter "s". It was very difficult to do, and nobody noticed (kind of like making risotto). However, Lori Colan's answer was far more interesting, so I'll adopt that one instead.

P.S. - I almost forgot the Calvin & Hobbes quotes:

You must submit to supreme suffering in order to discover the completion of joy (John Calvin)

Science is the knowledge of consequences, and dependence of one fact upon another (Thomas Hobbes).

5/8 - Daily Report, Day 40

Another good night all around. We have therapy (OT and PT) planned for the whole day and he will probably enjoy it -- particularly the informal Pokemon and Yu-Gi-Oh video game occupational therapy. A happy mood all around -- including Mommy and Daddy. BP running a little high (around 130) during the day - they are trying a new medicine today. Birthday party planning (for both the in-room party and the after-departure gala next month) proceeding full-bore. Yu Gi Oh and Pokemon party paraphernalia will arrive (via Fed-Ex) today or tomorrow. Let the frivolity begin!!

To avoid infection, we continue to try to keep our ICU room until we're evicted. It may not continue forever, and we're practicing our germ warfare protocol.


A prize for the reader who can identify the peculiar nature of the blog today. (Note the cartoon hint . . .)

The 5/7-5/8 overnight blog entry included (among the over 20 that I incorporated) each video game machine in our home arcade.

May 7 to 8 - Rehabilitation, Silverman style

Like a Phoenix, he's back to full strength again. The berserk period is over, which means no more frenzy and no major havoc. The antibiotics have repelled the space invaders, and he now tests negative for C.Diff.

He's off contact restrictions, and off most of the machines (no more annoying pong sound every 10 seconds). Tomorrow we restart the full range of physical therapy, occupational therapy, track and field practice, french lessons, tuba, jousting, etc. Just as importantly, they've taken off his hand-boards (which worked as the defender of his IV ports) so that he has full range of finger motion.

We have to scramble to buy some of the latest video games in time for his birthday on Thursday. We're planning on a low-key in-room Star Wars party (featuring a cameo from the people who dress up like Stormtroopers and come and visit pediatric wards).

He's in good spirits, except when they try to give him injections or blood tests. When they stir up that tempest, he fights back like a street fighter. He's looking super. Mario's pizza is still the primary request, although tonight it's burger time. We still dig (dug, actually) the hospital food, but it's getting old.

We haven't gone back to the main pediatric floor yet. It's a germ battle zone out there, so we're hiding in the room to punch out (or at least outrun) the infections. We wash every time we touch a wall or pole. Position of each of the numerous bacterial cleanser dispensers is noted on the handy map we give visitors. When we face occasional elevator action, we try to let other people touch the buttons. We're on the vanguard of paranoia.

P.S. - For the very few people who asked (or even noticed), yesterday's entry includes the titles of 28 Tom Cruise movies.

5/6-5/7 Status Report - Cruisin'

We're cruisin' today. We've been watching a lot of cartoons, because days of thunder and rain (man, it came down hard) have severely limited our time in the downstairs garden. During the storm it sounded like the war of the worlds outside our hospital window, but the storms have subsided and we're back to a plain vanilla sky.

Now that he's in better shape, I expect we'll spend a lot of time in the garden (weather permitting). He likes sitting under the magnolia and looking at the different kinds of rocks. I like it, because I collected started minerals as a kid at about the same age. I'd suggested a trip to Franklin, NJ (the worldwide mineral collectors mecca) as a Make A Wish trip, but all he wants right now is Nickelodeon Hotel in Orlando.

Far and away, he looks better than he has all week. He's sitting up, talking, laughing and joking. He's very, very excited about his big boy 7th birthday on thursday. No more little baby stuff. Now he's a kid-man.

Meanwhile, our top gun physicians haven't figured out the blood pressure issue yet, but they are working on it. Right now, fixing the blood pressure issues ASAP is the primary mission. Impossible? One, two and three days of new drug cocktails have everything pretty much stabilized -- except for the blood pressure. Meanwhile, no new tests (spinal taps, MRIs) are on the horizon. His stool seems much healthier, and no longer look like infant poop (i.e, the color of money).

Things seem positive and we approach it one day at a time (with eyes wide shut). We want to avoid losin' it again. They've made all the right moves when bad things happen, but we need fewer bad things to happen. He's probably in good enough shape to get released back to the main floor, but braving the panoply of germs and avoiding collateral damage is risky business. So we're taking it verrrry slowly. At the very least, we'll be out by the Fourth of July.

We have dialysis tomorrow. I think the kidneys will be back at full force very shortly, but I'm in the minority. Report to follow.

I've got a meeting at the firm tomorrow. It appears my litigation team doesn't need me much, now that the young guns have taken over. A few good men can do wonders. I've been at work so infrequently, I'm more of a legend than an actual employee. The office building security staff now thinks I'm one of the outsiders, and keeps asking for ID.

If he falls asleep early, I have some DVDs (The Last Samurai and Jerry Maguire) to watch and books (Freakonomics and Interview with a Vampire) to read. Of course, I'll probably end up watching SpongeBob and Fairly OddParents. You have to ease back into reality very slowly . . .

5/6 Report - Q: How are you? A: Haiku!

In the hospital
Waking up with a pin prick
Worst part of the day

Blood tests seem ok
Pressure still a bit too high
Cartoons should fix that

Had heart EKG
Nothing bad was reported
No news is good news

Seems in good spirits
Making a bit more urine
I'm optimistic

39 days in here
Daddy sometimes gets very bored
Now see what happens . . .

Haikus are easy
But sometimes they don't make sense
Refrigerator

5/5-5/6 status report

Everybody had a good day. Jacob got to wheel around in the wheelchair, nap, shop for Yu Gi Oh cards on EBay and watch some TV. Mommy got out for a little Target therapy. Daddy got to work in a quick 60 mile bike ride (which makes up for having to miss a race tomorrow).

Jake seems healthy. As I (Dr. Dad) had predicted, the hallucinations and eyesight issues seem to have disappeared once the Adavan wore off. No observable seizures today. Other than medium-elevated blood pressure (high 120s to low 130s), he didn't have any major issues today. He had a cardiac ultrasound study in the afternoon, but we haven't received the results yet. He made urine at a decent clip today.

He's a resilient kid, with an especially resilient brain. Like they say . . .

CYRIL: You know what I'd like to be? A cartoon of some kind. You know, like when they get hit on the head with a frying pan or something, and their head looks like the frying pan, with the handle and everything? Then they just go boiiinnng and their head comes back to normal? Wouldn't that be great?

(from the movie Breaking Away (1978), which I know by heart)

5/5 - All that (and a bag of low sodium chips)

He slept well (i.e., like a rock). So well that it was really difficult to wake him up. Blood pressure and heart rate were and are solid, and no fever. Poopie is back to normal. A little urine. All in all, an excellent post-dialysis day.

More importantly, he woke up in a good mood. He knows and recognizes everybody. He's communicative (well, as communicative as he ever is at 6:00 a.m.) He's hungry. He's pleased with the presents that Grandma brought. No hallucinations so far. Short range peripheral vision seems much improved.

For the next few days, please call first if you're going to visit. If you bring food, he's now on a low-sodium diet (1500 mg per day), so we're on a sympathy low sodium diet. We already have a case of mail order organic low sodium low oil microwave popcorn. The packing materials probably have more flavor, but he likes it. It reminds me of when I came off the South Beach Diet a few years ago and believed that Powerbars were really tasty.

5/4 - The prognosis

Jake had his MRI and EEG. It was an excruciating day, because you have to refrain from food pre-MRI, and all he wanted all day long was food. He got more and more worked up and grumpy about hunger, and it ultimately took three doses of the sleep medicine to put him out for the MRI.

The neurologist's opinion is what I expected - It's either very scary or somewhat reassuring, depending on your life outlook. He has multiple brain lesions, which could be impairing his functions. Sounds awful, doesn't it? The neurologist thinks they were caused by the high blood pressure.

However, these kinds of lesions are treatable and the body cures them on its own. In layman's terms (which is all I've got, until our friend Jon the neurologist guest blogs), when you get really high pressure, the brain gets a bit leaky and brain fluid leaks into the blood. Take away the pressure, and the lesions start to resolve themselves. The MRI shows no bleeding, no pools, no bursting. It's kind of like a brain bruise. The MRI also shows the infarctions from the prior strokes have essentially disappeared. It's my belief that the same thing will happen with the lesions.

The neurologist has suggested there's a possibility that the hallucinations and the eyesight issues could be from the brain lesions and not the Adavan. We'll keep an eye out on this, but my parental instincts and our previous experience with painkillers make me believe that it's a pharmaceutical side effect. On the other hand, if the hallucinations are going to continue until the lesions completely disappear (which can be three to six weeks for them to resolve on the MRI), our lives are really going to stink for the coming weeks.

So - where does this leave us? He'll be on anti-seizure medicine (Depakote) for a while. We'll continue to carefully watch his blood pressure. We (i.e., not Larry, but the rest of the family) will continue to second guess every physician in the hospital as to where the blood pressure issues are coming from and whether this latest event was avoidable.

P.S. - the neurologist that we met with is the same one who gave us the "gruff" assessment last month. Today's consult was a pleasure. Call off the hit squad (you know who you are).

One special acknowledgement. I'd mentioned in a previous entry that Jake likes Gushers. Our friend Camille and her son GianPaul created a "Gushers tree", which is like a Christmas tree made out of packages of Gushers. You really have to see it.

5/4 Status Report, continued

Akerman rushed over a replacement power adapter. I was without internet access for almost an hour. Traumatic, but we overcome . . .

Jake is still hemolizing (breaking down) red blood cells, so he gets transfused (they add a pint and check the oil) when he gets dialysis. It may be that he's still in HUS mode, which could explain some of the other things going on. He's had one or two microseizures (10 seconds or less) this morning.

Dialysis ends at 12:30, and then we go to MRI and then EEG. They'll give him a sleeping medication to get him to hold still for the MRI, so he should be out cold for a while. Of course they said that about the Adavan, and he's still hallucinating and drooling like a drug addict in a Dragnet episode.

Maybe this is all C.Diff related? Bacterial infections have been the bane of our existence. I am reminded of an instructive science experiment regarding bacteria:

Get a microscope and some spit. Put the spit on a glass slide and put it under the microscope lens. Now look through the eyepiece. You'll notice, if you look closely, that you can't see anything, because you have no idea how to operate a microscope. But while you're looking, billions of germs, left on the eyepiece by the previous microscope user, will swarm onto your eyeball - which to them is a regular Club Med - and start reproducing like crazy via wild bacterial sex. You'll probably need surgery. (Dave Barry, 1995)

5/4 temporary update

Nothing much to report this morning. He was up all night in altered states. My favorite line was "Who runs this organization? Is it evil?" Jen and I alternated staying awake so we could calm him when he would see monsters. She got the brunt of it. Right now he alters between half-asleep and full-ornery.

We have dialysis, a CAT scan and an MRI scheduled today. The day's just packed. I don't know the times that they will do those tests, but he's fasting for the MRI so that's another aggravating factor.

The laptop is dying, so this is it for the report until the office hand delivers me a new power adapter.

May 3 Status Report - Rainy Day Women #12 & 35

Just plain weird. Scary. Occasionally mildly entertaining. Mostly scary. And really, really weird.

We know he's sensitive to Adavan. He'd already had a couple of doses this week. While I was gone this afternoon, he started having multiple mini-seizures. They appear almost narcoleptic, where he nods off in the middle of an action or thought. It may be a remnant of the previous strokes, but it's more likely (to me, anyway) a symptom of the multitude of drugs and conditions he's fighting. His CAT scan earlier in the week showed some brain changes, but they were in the nature of an equilibrium shift, not infractions or ruptures.

The immediate treatment to stop the seizures was a double dose of Adavan. Now he's a blabbering (free association) mess. That would be OK (we're almost used to it), but he's also hallucinating some scary stuff. Tubes become snakes, and hands become claws. He sees something scary and shrieks in agony. He blabbers in full sentences with full vocabulary, so intelligence and motor function are intact. Now that he's back on Adavan, the peripheral vision issues are also back (but we now know those thinsg resolve when the dose wears off).

Tomorrow they are going to do another MRI and another CAT scan. Chances are that the scans won't identify a culprit, but we'll see. I keep saying the same thing - he's intact but they need to "twiddle the knobs" of medications to get him stable. I'd better be correct.

5/3 -Things are Cool

He slept well, and blood pressure, heart rate and fever seem under control. He's hungry, which is a good sign. His eyesight also seems much improved, but we'll see how the day goes. For now, things are cool.

Now for some spirituality:

BEAVIS: How come, like, some stuff sucks, but then, like, some stuff is pretty cool?
BUTT-HEAD: Uhhh, well, if nothing sucked, and everything was cool all the time, then, like, how would you know it was cool?
BEAVIS: I would know. You just said, everything would be cool.
BUTT-HEAD: NO, buttmunch. I mean like, let's say someone came up and just hit you upside the head? Well, that would be cool.
BEAVIS: No it wouldn't. That would suck.
BUTT-HEAD: Yeah.... hits Beavis repeatedly~
BEAVIS: Owww! cut it out butthole!
BUTT-HEAD: That was cool!
BEAVIS: No it wasn't. That sucked!
BUTT-HEAD: Yeah, but like, you know, after it's over, doesn't it, like, feel pretty cool?
BEAVIS: Oh yeah.
BUTT-HEAD: See, you need, like, stuff that sucks to have stuff that's cool.

5/2 to 5/3 Status Report

Our long nightmare is finally over. Britney Spears performed live today for the first time in three years. What a relief. According to AP reports, Momma Spears appeared in boots, a sparkly pink bra top and a short skirt (with her belly ring out).

On to more pedestrian local matters. Jake is calm right now. That may be due to a medicated calming of the blood pressure, but it's more likely due to the Adavan narcotic dose that they gave him. It really takes the edge off - to a dull curve. He's semi-lucid and communicative, but with a touch of hallucination. The clinical term is "loopy." He's got some of those "stoned" mannerisms - like playing with his lips like they are some kind of new discovery.

His muscles are so relaxed that he can't see anything closer than 6 feet away. The docs believe that's another narcotic side effect, but it had damn well better resolve itself by tomorrow or we'll get nervous.

He's still got a low grade` fever, which spikes in-between Tylenol doses. However, it's much lower than it had been. We don't know the cause of the fever, and they haven't identified any infections other than the C.Diff.

The medical staff is talking about re-releasing us back to the general floor in the next few days if he stays stable. We'll see. Jen insists on pre-inspecting any new room.

They've put him on a hypertensive diet until further notice. That limits him to one gram of sodium per day (1000 mg). Since our attempts at "parental limits" are futile, please don't bring salty snacks. On the other hand, we always welcome the kind of gourmet food that Camille Battista and Susan Bellante brought today - a full-blown Bella Luna dinner including cheesecake. Coupled with the gourmet homemade Italian food that the Carvers brought yesterday, Jen and I are fully carbo loaded. However, despite the fact that all we do is sit and eat, we still try to keep up appearances. Today Jen came to the hospital in boots, a sparkly pink bra top and a short skirt (with her belly ring out).

5/1-5/2 Status Report

Things have stabilized. They've removed the breathing tube. He's still suffering from fever (103+), elevated blood pressure (150+) and elevated heart rate (180+). Some of this may be from what ails him, and some may be from the drug cocktail that they've given him to combat the illness. He can talk, but is mostly groggy and/or asleep while everything resolves. He has a five sentence primary moaning vocabulary - 1. "Cold!"; 2. "Itchy!"; 3. "Mommy!"; 4. "Daddy!"; and 5. "What's on Cartoon Network?"

We still don't know what the full underlying problem is. In particular, the high blood pressure has been a constant post-dialysis challenge the past week, but the combination of (1) the renal issues, (2) the C.Diff. infection (which involved 3 hours of vomiting and diarrhea last night) and (3) a potentially infected catheter, may have combined to kick his scrawny little butt.

On the other hand, we've got food. Cathy and Karen have brought a brand new refrigerator and groceries. It's an unbelievable gesture. All we need now is a keg and a grill.

The real high point of my day was receiving an email from our friend Jon, who is a neurologist by trade. The email said, in essence, "Sorry to hear about the latest development. You should know that a seizure doesn't result in actual brain injury". I didn't know that, and it put everything back into context -- which seems to be a continuous theme.

OK- now for some elemertary school brain humor:

What does a brain do when it sees a friend across the street? A brain wave.
What kind of fish performs brain operations? A neurosturgeon.
Why was the neuron sent to the principal's office? It had trouble controlling its impulses.
What do you call a cow that is a brain researcher? A "moo-roscientist."

5/1 - the Adventure Continues

It's not meningitis. That's good. They hope to exubate him (take the breathing tube out) this afternoon once they get the fever (103 degrees) under control. That would be good. He's in pain and crying silently but visibly. That's good, too.

Thinks really suck when the only "good" things are the absence of worse things.

The cause of the fever could be an infected catheter, or something else. We don't know yet.

5/1 - Come for the bagels, stay for the life support

A bad, bad day. After dialysis, Jake developed high blood pressure again, and it lasted all day and night. He started vomiting at 11:00p.m., and that lasted a few hours. He ended up with a seizure. Not a tremor seizure, but a seizure where his eyes and head locked to the right. The full medical team came (10 people at one point). First, they put him back on the respirator. They then rushed him for a cat scan (no observable bleeding, thank g_d), and they did a spinal tap and a battery of blood tests. We're waiting for all the test results to come back. Meanwhile, he's on all the same old machines. He's out cold, so we don't know how he's doing.

We've moved back to our old room (455) in the ICU. They still hadn't cleaned his previous bloodstains on the ceiling, although you really need to know where to look (it blends with the artwork).

Jen's prediction/prognosis is that he can't physically handle the hemodialysis, and that we'll need to get him stable enough to install a "permanent" periodialysis catheter until the kidneys come back.

Ditto for the kidneys. Occasional small urine.

No kid visits for the forseeable future.