Please take note and keep bumped today

[Crinkle]

good to hear things are still getting better

[Squirrel99]

Great News so far. Still thinking about you, Nik and your family. Eps' your doing an outstanding job so far with all you've been through. I've experiended similar ups and downs in life and can say with the positive and optimistic attitude you have- it will take you a long way and affect others positively.

[Dexter Rutecki]

This was a few months ago, now, and I was just wondering what there is to add.
EPs?

[EPSkis]

Thanks for the bump, Dex.

Well, I'll have to go back a bit first, but ~ We'd been getting readings on his labs showing him at almost 50% for a month and a half or so. We had another set drawn 2 weeks ago, and the next day, the lab called us VERY excited and told us that his creatinine was down to0.6 and his BUN was down to 32. In English, that meant his kidneys were functioning at about 89%.

Obviously, we were extremely happy, but....Considering what the levels WERE and everything that's gone on..I remained skeptical. We were told that Children's Hospital also wanted to verify those numbers, and they wanted us to have a second set drawn the following day.

Turns out that they did get a different set of numbers, not as GOOD, but certainly better than where they'd been for the last 2 months or so. Creatinine of 0.9. He still has elevated protein and potassium, so although the diet's been relaxed a bit, we still have to monitor it. Translation: the protein is an indicator that when his kidneys started healing, a lot of the internal framework of the kidneys were extensively damaged. We knew this already, of course, but because of the time that's lapsed, they believe that some of the tissues at the top of his kidneys may have healed alright, but basically the openings are larger than they should be. Nothing to be alarmed about (yet), but it could be a concern later. So instead of 89%, we're loking at about 60% for the time being. We're told not to give up any hope on his recovery, that in cases like his, there's still a lot of progress that can be made even up to a year later. Lots of fingers & toes still crossed.

Docs also recommended that he be taken off one of his 2 blood pressure meds, which was Propanolol. They are also taking him off the calcium carbonate & seeing if his kidneys will be able to keep up with his current diet. We were expecting a pretty nervous week, but he's actually responded very well. Since we've been home from the Hospital, his meds have looked like this:

8am: 3cc's of propanolol, 2.5cc's of amlodopine, (bp meds) 10cc's of folic acid (vities) & 5cc's of calcium carbonate. (Tums, basically. Actually serves several purposes, including pulling excess potassium & sodium from the body.)
2pm: 3cc's propanolol,
8pm: 3cc's propanolol, 2.5 cc's amlodopine.
(And another 5cc's calcium carbonate with every meal.)

Despite everything, he actually does pretty well with all the meds. He (usually) sits patiently while we give him all his meds, and will (usually) sit calmly while we take his blood pressure. His pressures were up a bit the first couple days this week that he was off the one bp med, but it strangely looks (To both Mom & I) like his pressures have gone DOWN in the last 24 to 48 hours. So that's good news too. They've also lifted the sodium restriction for now, but his blood pressure will be the first indicator as to whether or not he needs to go back ON the restriction. It's amazing how very little sodium it takes to make food taste better, but it's also amazing how much MORE sodium we eat than we really need.

Anything else? Well, we started him in a new daycare, which is VERY attentive to all of his needs, and Nik's been having a blast there. (Helps that the Director is a friend of Mom's!) It's referred to as a "learning center", not a daycare ~ Whoda thunk there was a difference? But there is.

Physically, he's still trying to catch up a bit, his muscle tone is MUCH better than it was, but not 100% yet. He was in the 90th percentile in both height & weight for his age BEFORE all this happened, but he's behind now. Was 35lbs in November before all this, but he's still only 29lbs now. We're getting there though. Slowly but surely.

Other than that, his general prognosis hasn't changed much since my last post, the Docs basically still don't know. Matter of fact, they don't seem to know squat. Talk to 10 Dr.s, get 10 different opinions. Only time will tell.

Again, thanks Dex.

(I gotta post a pic or 2. I'll staple a post-it reminder to my forhead today.)

[Dexter Rutecki]

Wow. Can't tell you how much I hope for the best. My wife's in the hospital right now (everything should be fine, hopefully she'll be home tomorrow) and it sure puts stuff in perspective. I really, really hope your kid makes as full a recovery as possible, but I know it's not going to be a 'magic bullet' scenario.
Send him a figurative crotch grab from the maggots.

[cololi]

Good to hear an update. Hopefully Nik will continueto make strides,

[EPSkis]

Originally posted by Dexter Rutecki
Wow. Can't tell you how much I hope for the best. My wife's in the hospital right now (everything should be fine, hopefully she'll be home tomorrow) and it sure puts stuff in perspective. I really, really hope your kid makes as full a recovery as possible, but I know it's not going to be a 'magic bullet' scenario.
Send him a figurative crotch grab from the maggots.

Thanks Dex. Hope everything is thumbs-up for Mrs. Dex. Let us know that everything's cool when she gets back home.
Yes, it does put everything in perspective. Hopefully if *I've* gained anything through this experience, it's that I believe I've become a more attentive Father. I liked to THINK I'd always been a good Dad to my kids, spent enough time with them, showed them enough love & affection, and basically showed them the attention they deserve by just "being there" for and with them.

Now I realize that I probably hadn't been the Dad I thought I was. Lots of little things that I never used to think about before. Maybe it was just a late-night run to the store for some soda & cigs. Instead of making sure he's asleep for the night, I'll take him along. When I used to get bummed out about not being able to go skiing or golfing when I wanted to because Momma was at work & I had to stay at home....I find myself enjoying those times more & more. I'll play when I get the chance.

I still cherish my time ALONE, don't get me wrong!

But spending time with Nik, whether it's whacking plastic golf balls in the backyard, kicking a soccer ball around, tackling each other in the living room playing football...Is more important than me spending time alone. Now I just can't wait for him to get a little bigger so we can ski and golf together! That's what I'm really looking forward to next. Was hoping for the skiing this year, but as you know - it has to wait for the '04-'05 season. Gonna try to hook him up with some cool gear over the summer.

[frozenwater]

good to hear the improvements man.

Also a good reminder to us parents that we should cherish every minute we have with our kids. Hell, I think I'll knock of early today and go play with mine.

[Dexter Rutecki]

Originally posted by EPSkis
Maybe it was just a late-night run to the store for some soda & cigs. Instead of making sure he's asleep for the night, I'll take him along.

Well, kids need their soda and cigarettes. Even I know that! (Cut the cigs for your kids, too, right?)
Yeah, shit like this definitely makes you appreciate things. When my wife was admitted yesterday I really stopped dwelling on the premature end to my season and thought about how the extra time at home is to be valued. Fortunately, everything looked good today, and Mrs. Rutecki got let out about half a day ahead of time, so we're all home right now. I think my daughter thought it was sort of a neat adventure being 'home alone' with dad for the first time, though (maybe I just thought it was an adventure, which it sort of was).
Again, best wishes to you guys--just because we haven't posted in this for awhile doesn't mean we're not thinking about it.

[GT40]

Thanks for taking the time to post the update.

Very Glad to here the Nik Man is still progressing.

When I hear about you spending time with your kids, it reminds of my time with my kids when they were young. Doesn't seem very long ago. Your right, that the time you spend with them is vital and irreplaceable.

[Foggy_Goggles]

Nik's an inspiration - glad to hear he's doing better.

[Foggy_Goggles]

Bump

This stuff is as much a part of this board as the powder skiing TRs. JONGs take notice, Nik is feeling better and ready to start kicking some ass.

edit: spelled the little guy's name wrong, now he's gonna kick my ass

[mrryde]

glad to see he's doing better