Please take note and keep bumped today

**EPSkis** · 12-22-2003, 01:36 PM

Sorry, been kinda lazy about posting the last few days.

Today's update, 12/22:

Well, we've had a bit more improvement ~ The Docs decided that since his pressures had stabilized and he's only requiring dialysis every other day, he could be moved back out onto the regular floor.

Between Tuesday & Friday of last week, his urine output numbers went up every day, showing us his kidneys are finally starting to open up again. They aren't functioning properly yet, but that should come within the next few days. As of right now, they're basically just getting the small clogs & blood clots flushed out. It'll take several days for the kidneys to start concentrating the urine & actually removing the acids, toxins, etc. Still in the "wait & see" mode.

His blood levels are kinda static at the moment. He's definitely been doing better, but he may still require another transfusion or unit of red blood cells. He's been doing ok with the cells alone, but his blood numbers aren't climbing back up on their own yet. So far, he's following the expected course of healing, but he's about 7-10 days behind where they want him to be. I'm attributing a lot of that to the fact we had so many problems early on with the dialysis. Yesterday was pretty cool, we can sit him in a wagon & take him for a ride, or over to the playroom they have set up for the kids. 'Course he's still got IV's hooked up, and a femoral line in his groin, so he can't walk yet, but they're going to move the line up to the base of his neck to lessen the chance of infection at the femoral site. Anyways, it's nice to see him playing around more normally, but he does tire out pretty quickly. He tried to stand up out of his chair, but his legs are pretty shaky from the last few weeks, so he's gotta hold onto something. Hope to have him walking around within the next couple days after they move the IV line. Gotta start getting some strength back into him. Anyways, we just hung out & watched football all afternoon & evening, in between games of Candyland. So far, he's 3-0 against me.

So who'd like to see a Philly / New England Super Bowl?

He's eating better, but still not quite enough. They're gonna have to put the feeding tube back in his nose if he doesn't start eating more, so we're trying to make him eat as much as he can now...

Still a long way to go, but we ARE finally making a little bit of progress. Doesn't look like we're gonna make it home by Christmas, but his b-day's in 2 weeks, hopefully, he'll be home by then.

Thanks all!

**truth** · 12-22-2003, 01:39 PM

Keep the good news coming EP...prayers are with ya.

**snowsprite** · 12-22-2003, 01:41 PM

Way to hang in there thru all this EP! Still thinking of you and the little guy. Keep updating please.
:-)
Sprite

**Tippster** · 12-22-2003, 01:45 PM

Good to hear. Thanks for the update! Hang in there, little mang...

Allright, on "3" everyone under 5 urinate. 1, 2, 3!!!

**glademaster** · 12-22-2003, 04:28 PM

Afternoon bump for the little dude.

-Ben

**The Reverend Floater** · 12-22-2003, 05:48 PM

Bizump for today's updizzle..

**HotRutteredBum** · 12-22-2003, 11:32 PM

Good to see things are improving
Keepin'The Good Vibes Rollin'

**glademaster** · 12-23-2003, 06:27 PM

Bump 'cuz it wasn't on the first page tonight. How's the little guy doin?

-Ben

**detroit** · 12-23-2003, 06:35 PM

Good news. Merry Christmas to the whole EP family.

Prayers.

**The Suit** · 12-23-2003, 08:16 PM

That's beautiful. Candyland's a pretty fun game, huh?

**laseranimal** · 12-24-2003, 11:36 AM

bump

merry Xmas nik and family!!!

**Dexter Rutecki** · 12-24-2003, 02:44 PM

Originally posted by EPSkis
Sorry, been kinda lazy about posting the last few days.

Uhhh, don't worry about it, EPs. I think everyone knows that your attention is probably better spent elsewhere.
That being said, what you posted is the best news I might have ever seen on this board (along with Plakes telling us that he was doing well, too). Very, very glad to hear progress is being made.

I hope the next update tells us he's back to normal function and ready to go home.
Really glad to hear about this.

Merry XXXXmas!! (That's the quadruple X mas you've heard rumors about)

**splat** · 12-24-2003, 02:55 PM

Wow, man. You've been through the wringer. Glad to hear he's improving. Talk about a parent's nightmare. But good things lurk on the horizon. Don't forget the power of prayer and if everyone says a little request to the Big Man Above, mabe we can help him along some more. Take care of yourself, too, bro.

-splat

**detroit** · 12-25-2003, 01:16 PM

Originally posted by detroit
Good news. Merry Christmas to the whole EP family.

Prayers.

Christmas bump

**cmor** · 12-28-2003, 06:36 PM

bump cus there's still stuff more important than worrying about the white stuff.

**The Reverend Floater** · 12-29-2003, 12:11 PM

BUMP for today's update.

**truth** · 12-29-2003, 01:53 PM

Man...this story kills me with every update. Bump for Nik...god bless ya EP.

From P mag...

edit: Yikes, this one's long. Whatever you're drinking or smoking, reload it NOW.

Hey all ~ Update from Friday 12/26 to today, 12/29:

Rough coupla days. Friday night, as I was leaving work at 7pm to go pick up my sister at the airport, I got a call my Aleecia (Mom), totally hysterical.

Without going into ALL the details, something was definitely wrong.
Turns out that Niklas had a siezure. They thought at first that he was having a stroke. Short story is that he'd gone into dialysis at noon on Friday, and over the course of a couple hours, Aleecia could tell that something just "wasn't right". She told the nurse several times that something was wrong, that he wasn't acting right, but the nurse insisted that he was just tired because of the dialysis, and everything was fine. Apparently, he just kept turning his head to the side, eyes just staring off, and everytime Aleecia would try to get close to him, he just got irritated, Not like him at ALL.
The nurse tried to get his blood pressure a couple different times, but he kept getting agitated & fighting with her about putting the cuff on his arm or leg. The nurse told Aleecia to just stay with him & try to get him to settle down & she'd come back in a little while to try again with the cuff. So, Aleecia convinced Nik to lie down with her & take a nap. Apparently, when Aleecia woke up about 2 hours later, she knew something was wrong. He was awake, but virtually unresponsive. He had his head turned to the side, eyes fixated, and he was drooling. SHe picked him up and ran him out into the lobby to the Nurse's station. They grabbed him out of her arms & immediately paged a team of Doctors who took over from there.

They took a set of labs & did a CAT scan which did show swelling on his brain, but the labs apparently showed that everything looked fairly normal. One of the medications they gave him was causing him to breathe erratically, so they had to intubate him. He was rushed back to the ICU & they kept on with the tests.

We were finally let in to see him at about 12:30am on Saturday. By then, he'd leveled out, they'd taken the tube out, his pressures had normalized and was doing better. He was completely drugged out, so he was barely able to open his eyes. When I walked into the room & he heard me say "Hey Buds! (one of my little nicknames for him), he opened his eyes for just a second & whispered a hoarse "Daddy!" & pointed up to the IV bags & then his arm where they'd just started a new IV. It wasn't until that moment that I realized we might be OK. He tried to talk for a couple seconds, but because he was so drugged, worn out physically from the siezure, and his throat all messed up from the tube, I couldn't hear what he was trying to say. After a few attempts at trying to talk, he finally just closed his eyes & went back to sleep. Aleecia was ecstatic to see how much BETTER he looked and as she was explaining everything that had happened, I just completely friggin' lost it. For the first time, it was HER keeping ME strong & telling me that he'd be okay. Without a doubt, the most difficult night of my life.
Aleecia stayed with him Saturday, while I went home & got my Sis & niece settled at our house. He gradually started coming around during the day on Saturday, but he was still acting very agitated, couldn't decide what he wanted ~ God save anyone that has ever tried to come between he & his blankets..But because of the seizure, it threw his behavoir for a loop. He wouldn't allow his blankets on his BED, let alone in his face. They'd tried to do an MRI on him to verify that everything was ok, but he was just fighting too much. Rough day for Mom. He kept asking for me & wouldn't let Aleecia cuddle him, which I know hurt her feelings. I got to the Hospital about 3pm on Saturday for MY shift, but by the time I'd gotten there, one of the Nurses had kinda taken over with settling him down. She was patting his back & he'd finally fallen asleep. He'd been awake since about 4am, so he was just completely exhausted. Again, he stirred when he heard my voice, looked up & said "I want my Daddy" to the Nurse. I went around the bed, started stroking his head & he fell right back to sleep. He woke up later on & was doing MUCH better after he slept for a few hours. He ate very well, he was talking fine, moving his arms & legs no problem, pointing to things, answering questions, etc. Made me feel a lot more confident that he was ok. The Docs said that they THINK it was just a mild siezure brought on by the hypertension. His blood pressure's been doing BETTER, but it's still tough to keep level. It's not getting as HIGH as it was, but those fluctuations are very difficult for the body to regulate. Apparently, it just got to be a bit too much. So far, he's been stable and everything looks like it's going to be ok. Yesterday, he was acting SO much better. If he didn't have wires & tubes sticking out everywhere, you'd never know anything was wrong with him. Docs said they probably going to keep him monitored for another couple days, but they'll likely put him back out in a regular room today or tonight, and there's a possibility that *assuming* everything goes well during the week that he may be able to go home by the END of the week. He's getting that MRI as I type, so within the next couple hours, we'll get a status on the swelling, and identify whether there may be any potential risks / problems associated with the swelling on his brain, etc. They said not to be surprised to see him fluctuate in his behavior, because it'll take about 10 days for the swelling to go away, and it could affect his behavior. But we're hopeful that he's weathered the worst of it & we can get back on track with his kidneys. Now for THAT explanation:

His kidneys have opened up an incredible amount. Over the last 4-5 days, the kid's peeing like a racehorse. The last CAT scan & ultrasound showed that there was an improved blood flow to the kidneys, and they'd opened up a GREAT deal more. Where before we were hoping for ANY urine output, he now at the stage where his kidneys are hardle even slowing DOWN. He's got a soaked diaper at least once every hour or two. Yeah, that's GREAT news, but his labs were still showing elevated creatinine levels, which would indicate that although they've opened, they still have started functioning. It wasn't until yesterday morning that the Doc told me that despite the still high creatinine levels, there are other indications which MIGHT mean that kidney function has at least STARTED. He was very cautious about the was he phrased it, but it's a positive indication no matter HOW you look at it. He did dialysis yesterday, and again did VERY well with it, so we're going to keep that up as long as we have to. I'm not sure how I put it in my previous post, but yeah ~ even though we may be going home by the end of the week, we're still going to be doing dialysis 2-3 times a week. I'm almost more comfortable with him STAYING at the Hospital. Especially considering everything that happened the other night. But again ~ knock on wood ~ seriously. Knock......
......we're past that now & Nik can continue the healing.

I'll update again soon with the MRI results, etc.

BTW ~ Those that have sent PM's, please check YOUR PM's. You've gotten responses, and several are still showing "unread".

Thanks again everyone. Even if you could take a second to whisper "C'mon Nik!" to yourself....Every bit counts & helps.

Erik

--------------------
"How full of creative genius is the air in which these are generated! I should hardly admire them more if real stars fell
and lodged on my coat."

Henry David Thoreau, 1856

**BigJay** · 12-29-2003, 02:07 PM

Thanks for the update EP, I hope your kiddo is on to a full recovery!

G · 12-29-2003, 03:30 PM

Give Nik an extra hug from all of us.

Despite this, he is a very lucky child to have such awesome parents.

stay strong

**Dexter Rutecki** · 12-29-2003, 08:21 PM

Thank God for that last big paragraph, EPs.
I'm really glad to read that, and really, really hopeful that the major corner has finally been turned. Can't wait to read that everyone's at home doing even better...