7/21 - Birthday Preparations and such

Tomorrow (Sunday) is Jake's birthday party. The party is at 11:00 at Gym Kidz in North Miami Beach (www.gymkidzmiami.com)
It's just off West Dixie Highway and 155th. If you are coming from I-95, take the 163rd street exit and go east to West Dixie Highway (just after the Honda dealership). Go south (i.e., turn right) on West Dixie to 155th or so and turn east (left). The facility is inside a warehouse complex. There are usually balloons outside, but I presume there will also be a bunch of parent-mobiles outside the entrance. Just look for the SUV convention.

Jake's doing OK. He continues to have unpredictable bouts of nausea each day, but once those pass he's fine. His cousins are in town for the week so there's been lots to do. They all went to Wanadoo City, which was OK. It would have been more fun, but we'd forgotten that girls and boys like to do different activities there, and they could never agree on a joint activity.

7/11 - Dangerous chemicals

Monday was our 12th wedding anniversary. I got Jen a massage and a "champagne and roses manicure and pedicure" at the Biltmore Spa. To make it really special, I scheduled the treatments for dialysis time (1:30 to 6:00) this afternoon, and I'm covering the hospital duty. So far, so good. With the wireless internet, I can respond to work emails and bid on Ebay Yu Gi Oh cards at the same time. Hopefully, I can keep those tasks separate. I'd hate to accidentally declare a mystic Yu Gi Oh attack on a client.

He's in pretty good shape. They are experimenting with different bandage dressings to try to alleviate the skin pain. He's got a copper deficiency, so he needs to drink hot cocoa. On the other hand, the mini marshmallows have no therapudic effect.

7/9 Update - Let's (Birthday) Party!!

We're planning his make-up birthday party for Sunday, July 22, 2007 at 11:00 a.m. at Gym Kidz in North Miami Beach. It's a reverse-invitation process. If you're within the sound of my voice (figuratively speaking), and you'd like to go, let us know at larrysilv@gmail.com so we can get a headcount. We had considered replicating my 40th birthday party (bounce house, cookout, etc.) However, the last few days of oppressive heat and humidity and intermittent rain have caused us to pick an indoor party.

Jake's doing OK. He feels crummy a few times a day, but I can usually distract him by changing the subject to something that excites him. Either that or he vomits. Dialysis is now 2:00p.m. M/W/F, so that lets Jake and Mommy sleep later. They don't get home from dialysis until 7:00 or later, so that makes family dinner later. That means he goes to sleep much later, and the cycle continues. If I get home early, I can knock of some Tour de France footage off the Tivo before it piles up. (My fearless prediction for the Tour is Alexandre Vinokourov, the pride of Kazakhstan)

Happy Fourth of July

We're hanging out in the coolest place in Hollywood - the pediatric ambulatory wing at Joe DiMaggio Children's Hospital. The usual dialysis kids are all here. You would think that you could skip a day now and then (kind of like going two days without dialysis on the weekends) but that apparently screws up the biological schedule. I'm skeptical that the body adjusts to a seven day schedule (i.e., the body gets used to weekends), but the docs have more experience than me.

In order to switch from morning 8:00a.m. sessions to 2:00pm sessions, they make you go through an 11:00a.m. session on one of the intervening days so that the body gets used to the time change. Today is our 11:00a.m. day, and then he'll be doing 2:00pm M/W/F for the foreseeable future.

He's been a little off lately, with bouts of nausea and fleeting bouts of grumpiness. The grumpiness is somewhat attributable to spoiledness (it occurs for frequently when we say no to a request), but there's enough chemical stuff going on in his little body that he may not be able to avoid it. He roll with it, and he quickly forgets that he was mad and forgets 9or pretends to forget) whatever he said.

Daddy did the Independence Day Duathlon, and did a personal best. I finally broke 1 hour (59.01) for the 2 mile run, 10 mile bike and 2 mile run. If the 14 people who finished ahead of me in my age group all test positive for drugs, I qualify for the World Championships.

Trip to the Office

By coincidence, today was our Summer Ice Cream Social day at work, so he got some ice cream and some candy. Since he's so thin, getting a sugar high is pretty easy to do, so he was wound up for the rest of the day.

I had forgotten to describe last weekend's trip to the comic book and science fiction convention. Lots of teens were in costume as anime characters (which is known as "cosplay"). Most of them were Narato related, which we're not really into. Some of the female costumes are way out, which isn't surprising because that's how women are drawn in japanese cartoons. Jake's not that interested in classic Marvel comic books (he likes the characters, but we don't collect them), which were the majority of the comics for sale. No Yu Gi Oh or Pokemon stuff to be found. There were some Super Mario stuffed toys that were cool (as seen in the picture), but not cool enough to buy. This was the only picture I remembered to take. For somebody who is a gadget hound, I'm very remiss in my picture taking duties.

He seems to be in pretty good shape. Potassium level is good, but phosphorus levels are a bit high. Tomorrow is a dialysis day. The Monday/Wednesday/Friday schedule continues no matter what, which means that July 4 is a dialysis day.

Mid Week update

The catheter is failing again, so he'll probably need to go into surgery next week to get it replaced. He's been a little under the weather this week. He may have a touch of the cold Jen just got over. However, he was well enough to go with his friends Remy and Zoe to Wannado City yesterday. It's almost like day camp without the bologna sandwiches.

The initial report from his second pediatric nephrologist opinion is consistant with the first opinion, so we're still on the transplant path unless something drastically changes. The kidenys are putting out urine, but aren't doing much filtering.

He's excited for the release of the Ratatouille movie on Friday, so that will be the big weekend activity.

He's going to spend the afternoon at Daddy's office tomorrow. That should be good for a few anecdotes. He doesn't have to rough it too much, because I have cable TV and videogames in my office.

Big weekend plans

Jake had a pretty good week. No major health developments. The blood pressure medicine is cut down a little, but nothing substantial. Mommy's got a bad cold.

The weekend should be fun. Tomorrow Jake and I are going to the Fort Lauderdale Comics and Anime convention. How cool is that! Go to www.Floridasupercon.com for details. I plan on releasing my inner nerd, although my outer nerd is fairly transparent and the inner nerd is usually visible.

If I can fit it in, the state track bicycle points race (elite division) championship is Saturday night. I may go and be an early casualty. I normally race Masters (old guys), not Elite (young guys). We'll see if I can go -- Jake gets bored watching the racing, and Jen needs to stay home and rest.

Driving to a comics convention is the right time to blast my Rush cassettes. The other Jen (Remy's mom) took me to the Rush concert last week, and I forgot to mention it. Just prior to Jake getting sick, we saw Geddy Lee taking his dad to dinner at Katz' Deli in Aventura. A brush with greatness (and dill pickles).

Happy Father's Day - June 17

Happy Father's Day. We had a fun day. Jake wanted to go to the Swap Shop again, and Mommy even came along. I had imposed a "no complaining on Fathers Day" rule, and Mommy complied. We bought some used toys and some video tapes. It was about 90 degrees, and it took a lot out of him. He's supposed to be on limited fluids (16 ounces a day) and its unclear whether the kidney and fluid issues implicate his sweat functions. I presume he can take more fluids if he's sweaty, but we'll clear this up with the pediatric nephrologist tomorrow.

We were going to go to the movies, but ended up watching TV and JOOST (which is TV through the internet). He's interested in The Fantastic Four and Transformers. The constant commercials for those movies are probably contributing factors. His favorite characters are Dr. Ben Grimm (The Thing) and Optimus Prime. In a very obscure coincidence, those two characters have something in common. They're both Jewish. Look it up.

Jake has a busy medical week, with three dialysis dates, a trip to the neurologist, and a second opinion examination at Jackson Memorial Hospital. He's been in pretty good shape, although he's been vomiting in the mornings (after he takes his blood pressure medicine but before he eats).

Weekend ramblings

We went to a birthday party today at the laser tag/arcade facility in Hialeah. He had fun playing the redemption games (win tickets, get junky prizes, etc.). He couldn't do the laser tag because the vest apparatus was so heavy it was uncomfortable for him.

As an aside, many people feel that redemption games killed the traditional "arcade," but in the age of super home video game consoles it is also possible that redemption is the only thing that keeps arcades alive. Do you really need to go to an arcade to play the latest and greatest when its easier to play at home or online? When we go to those places, he may play one or two jetski racing games, but he really sticks with the redemption stuff. I guess having a home arcade makes him a little jaded.

Anyway, birthday parties are a little tough because he really shouldn't eat pizza, but we roll with the party, focus on the candy and adjust the eating for the rest of the day. One of my favorite websites, www.fark.com, had an entry today discussing people's favorite candies. See http://forums.fark.com/cgi/fark/comments.pl?IDLink=2871924. Jacob says these are his favorites:

Now and Later
Sour Skittles
Fruit Gushers
Skittles
Fruit Roll ups
Sour Gummy Worms
Airheads
Swedish Fish
Tootsie Pops
Extreme Sour warheads
Pez

For Dad, its:

Fruit Flavor Tootsie Rolls
Dark Chocolate Raisinettes
Mike and Ike
Smarties (the Nestle version of M&Ms)
stale gummy bears
Fireballs
Razzles
Fruit Flavor Necco (mmmm, chalky)
Hershey Milk Chocolate

June 16 Update

Jen had her kidney donor compatibility tested, and it seems like she's a pretty good match. I think we're tired enough of the dialysis, pharmaceutical regimen and limited renal diet that she wants to accelerate the transplant process. However, our pediatric nephrologist returns from his two week vacation next week, and I presume he'll remind us to stay the course (i.e., a transplant next summer).

Jake is doing well. He doesn't want to go to the day camp at the local art museum, so there's no camp this summer. The art camp is only real camp option for him because it is day-to-day. Since he's in dialysis Monday, Wednesday and Friday, and isn't allowed to go swimming, there aren't a lot of camp options. I guess Tuesdays and Thursdays will be a series of play dates.

June 13, 2007 Update

His spirits have been very high. He's got lots of energy. Since he doesn't do much strenuous physical activity, he runs from place to place in the house, dances and shakes his booty to any music that's playing, and is generally full of pep. He's got even more energy on dialysis days like today, which presumably comes from the nap that he takes during that process.

The kidneys aren't doing much filtering. We tried lowering his potassium medicine (the yucky one), based on the belief that he was pooping more (which helps that process). Unfortunately, his potassium levels were very high on today's blood test. That medicine has to be continued until further notice. He and Mommy apparently made some kind of deal whereby he'll agree to take it as long as I'm not involved. Sounds like another surreptitious devaluation of the bribe dollar, but I won't ask too many questions.

6/10 Update

Jake was in good shape this morning, so I took him to Florida's second favorite tourist attraction - the Swap Shop in Fort Lauderdale. I had tried to take him last week to look for fake Yu Gi Oh cards, but we went at 5:00 p.m. that time and everything was closed. On a Sunday morning, it's in full splendor. While walking around (with him on my shoulders the whole time) I explained to him that this is what people did to get rid of their stuff before they invented E-Bay. On of the vendors overheard me and said that he just likes to be outside. It was 88 degrees at 10:30 a.m., so we only stayed about an hour. We bought some kid videotapes (3 for 5 bucks, such a bahh-gan) and some Yu Gi Oh Hot Wheels cars. We capped it off with a Mister Misty at Dairy Queen.

He was generally good this weekend, although the blood pressure was high -- which led to extra medication, which led to tantrums, which led to high blood pressure . . .

6/9 update - It wasn't my fault . . .

As soon as I rededicated myself to frequent updates, the rocket scientists at Comcast disconnected us for three days. The service people came out today, and told us that they had inadvertently disconnected our service (at the pole) instead of our neighbor's service. It is kind of hard to go without TV and internet for three days, especially with his excellency demanding his two daily shows.

He's been pretty good. He throws the mother of all tantrums when he has to take his potassium-reducing medicine (8 ccs of yucky stuff), but other than that he's in good spirits. The temper tantrums are soooo bad (I hate you, etc.) that it scars mommy and daddy for the whole day, but he shakes it off and forgets about it. It's the kind of advanced nasty tantrum you'd expect out of a twelve year old teenage runaway who wants to dye her hair blue against parental wishes. I guess he's just advanced for his age.

He came to work on Thursday afternoon with me, and was great. He was in really good spirits and it was great to walk him around and introduce him to the many people who send him wishes and presents. The fact that he got sugared up on the walk through also helped his energy level.

Kidneys are still "eh."

June 6 update

We have a foundation upon which we can base Jacob's daily regimen - the premiere of the new Pokemon Diamond & Pearl TV show this week. It comes on every weeknight at 7:30 on Cartoon Network. If he complains when he takes his medicine, we can threaten to withhold the show. If he doesn't eat his food, no show. This is all we have left. Let's face it, we've failed as parents. On the other hand, the show has a female lead, so we're really educating him and broadening his horizons on gender equality issues. Just kidding. We've failed.

I did have one good Pokemon related moment. On the premiere episode, the lead character (Dawn) had to travel to pick up her Pokemon, but kept getting lost. I told Jen and Jake - she should take Route 201. One minute later, they showed the correct road sign, with Route 201 on it. Jen looked at me astonished. I admitted that the Pokemon Diamond and Pearl videogame came out last month (Jake received it as a birthday present from the Ornsteins), and I still remember the maps. Nerds rule!

He has dialysis today. The blood pressure has been a little funky for the last two days, but he's been in very good spirits. No big plans for the rest of the week. We may bring him to watch the firm's softball game tonight, which is a fun family outing. We'll see how dialysis goes. The new catheter is working fine, although the change in the apparatus didn't reduce the skin pain he endures when they have to change the dressings.

June 4 Update - OK, I got a little behind

Jake is full of energy. He's feisty. Given what we've been through, you'd think we couldn't get enough of that. You'd be wrong.

Last night, he was disappointed because we "promised" that we'd watch "Night at the Museum". We had some things going on yesterday (the Lion King show, a trip to the Swap Show, a late dinner). All fun kid things, and each accompanied by a toy. One thing leads to another, and it's 9:00 p.m. with no movie. We tried to tell him that we'd have to defer the movie until tomorrow. At that point, he got mad. He followed Mommy around and said "you lied to me". He did that continuously for 30 minutes, varying his tone and diction every few minutes for emphasis.. "You lied to me. You lied to me. You lied to me ..." You get the idea.

The best conversation of the weekend:

"Mommy, remember you said my brain was injured in the hospital. Well, I still have the sore on the back of my head, and my brain hurts."
"Honey, that's not how it works. the brain stuff is different than the sore in the back of your head. That was a bed sore . . ."
"Mommy, doesn't anybody understand sarcasm around here."

Mental acuity is at 100%. Physical dexterity is close to 100%. Kidneys need work.

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.