Thursday, May 31, 2007
He has dialysis Friday, and we'll see whether the new catheter improves the clearance process.
Wednesday, May 30, 2007
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.
Tuesday, May 29, 2007
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!
Monday, May 28, 2007
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.
Saturday, May 26, 2007
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.
Thursday, May 24, 2007
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.
Wednesday, May 23, 2007
Tuesday, May 22, 2007
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.
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.
Monday, May 21, 2007
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.
Saturday, May 19, 2007
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.
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.
Friday, May 18, 2007
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.
Thursday, May 17, 2007
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.
Wednesday, May 16, 2007
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."
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.
Tuesday, May 15, 2007
Monday, May 14, 2007
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.
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.
Sunday, May 13, 2007
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.
Saturday, May 12, 2007
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.
Friday, May 11, 2007
Thursday, May 10, 2007
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.
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.
Tuesday, May 8, 2007
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.
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).
Monday, May 7, 2007
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.
Sunday, May 6, 2007
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 . . .
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
39 days in here
Daddy sometimes gets very bored
Now see what happens . . .
Haikus are easy
But sometimes they don't make sense
Saturday, May 5, 2007
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 . . .
(from the movie Breaking Away (1978), which I know by heart)
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?
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.
Friday, May 4, 2007
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.
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)
Thursday, May 3, 2007
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.
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.
Wednesday, May 2, 2007
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).
Tuesday, May 1, 2007
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."
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.
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.