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EPSkis' 3 y.o. has a serious medical problem - Page 2

post #31 of 57
Being a parent for the past 16 years, I can only imagine what you and your wife must be going though. My prayers are with you,

Hope everything turns out well.
post #32 of 57
Happy Birthday, Erik. I hope Nik is doing better today.
post #33 of 57
Just popped in to post the update link, but I see Jimmy beat me to it - thanks Jimmy!

Thank you all for the continued thoughts. We're working on it!

Make a run or two for Nik & I, would you? We're ALL anxious to get out there!

Thanks again & I'll update soon.


post #34 of 57
Erik, Nik, et al...
My thoughts are with you and a prayer has gone out. Although I'm not a parent, I can relate to your situation as I have worked in the adminintrative/business side of a hospital for twenty years and have seen firsthand similiar fighting kids. Hope Nik improves each day!
post #35 of 57
Copied update:

Update 6 ~ Week 2

Yup - As of tomorrow, it's 2 weeks. Never would have imagined it. Well - Nik's still fighting this thing. We've done 2 full dialysis cycles in the last 2 days & removed 3 liters of fluid from him..He's tolerating it pretty well, other than high blood pressure due to the hypertension (because his kidneys aren't working yet) and the fact that he's retaining a lot of water still, so it elevates the blood pressure. He's taking meds to keep it down, and it does drop to well within regular limits during & for several hours AFTER the dialysis.

We had to completely STOP his food intake for a couple days to give his stomach a chance to heal & we finally got him to eat a good dinner last night. Kid was revenous. Guess I would be too if I hadn't had a meal since Thanksgiving. He kept it down until about 6am this morning, so hopefully we're making some headway with THAT at least. We've had a couple SMALL indications that there was some urine production, but not enough to get the Docs too excited yet. Realistically, we've only had about 6 days of complete dialysis because of all the problems we were having with the other procedures, so we're still praying that we're on schedule with this. Gets discouraging when we're getting ready to head into week #3 and we haven't had all the signs we were hoping for by now, but we do have some time to go before discussing other options. He's certainly complaining a LOT less about his stomach pain, so we're hoping he'll start to be able to et more regularly. Better nutrition should be a BIG help. The last couple days have been pretty good overall, he seems to be in less pain, and he's eating better, so I'll take that as progress.

The plan for now is to just continue with what we're doing. Speaking with the Dialysis Nurse this morning, she said it's not unusual for this process to take 3,4,5 weeks and HAS seen it take as long as six. So we're still doing ok, but obviously, we're hoping it's sooner rather than later.

I'm gonna try heading back into work tomorrow, as I've only got a couple vacation days left to burn before I stop making money & insurance doesn't get paid. Sucks, but I certainly can't afford to have THAT happen. Thank GOD for insurance, because it'd take a lifetime to cover what this experience is gonna cost.

Mom is kinda in a rough spot, cuz if she's not at work, she doesn't get paid. But the BIG bummer is that with the way her Company / Insurance works, if she goes BACK to work she has to commit to a 30hr. week. We just can't make that jump yet though, not until Nik's healthy & back home.

My Company is quite a bit more lenient, and with 8 years in, they're cutting me a lot of slack. I just don't wanna push THAT envelope too far. I lose MY job, we're friggin' screwed.

So ~ not much in the way of NEW developments, just more of the same. Keep on with the dialysis & wait for his kidneys to catch up. Frustrating to see him getting better in other areas, but to still be waiting for the kid to PEE! Man, the Docs weren't lying ~ I'll never be so happy to see a wet diaper.

Birthday? Well, I've officially hit the "getting older" end of the scale, but if I can still act like a kid, it's ok, right? Got a sports trivia book, which I've almost finished already, a balloon & a piece of vending machine carrot cake. Was good enough for me.

Anyways ~ keep the faith and thanks all.

Here's to hoping this week brings GOOD stuff!

Talk soon,
post #36 of 57
My prayers are with you and your son.
post #37 of 57
I know we've never met or spoken, but please believe that all my thoughts and prayers are with you. When I hug my daughter tonight part of it will be for you and yours. Hang in there and know we are all praying for you.

post #38 of 57
Erik, my thoughts and hopes are with you and your family.
post #39 of 57
I just noticed this thread for some reason and I feel so bad for your Nic. As a Father and Grandfather I know how tuff it is to have an ill child and how helpless you must feel at times.

Remember that you are not alone and that your thoughts and prayers are heard not just by God but by everyone. If it's any consolation please know that prayer and faith has helped me through some tough times. Hang in there and be strong. [img]graemlins/angel.gif[/img] [img]graemlins/angel.gif[/img] [img]graemlins/angel.gif[/img] [img]graemlins/angel.gif[/img] [img]graemlins/angel.gif[/img] [img]graemlins/angel.gif[/img] [img]graemlins/angel.gif[/img]
post #40 of 57
Thread Starter 
Update for Tuesday, 12/16, copied over from EPSkis post:


Update for Tusday 12/16

Making a little progress. I'm getting sick of the term "cautiously optimistic", but considering all the issues we've had, it fits.

We had a LITTLE bit of urine yesterday morning, and throughout the day up until THIS morning, he passed a total of 44cc's of fluid. They did an ultrasound on him and found that he had 50cc's of urine in his bladder. This all means there is SOME kidney activity, and there is sufficient blodd supply still going to the kidneys, which was a concern. This would appear to indicate that we're finally heading in the right direction. Blood levels are still all over the place, but they can't get an accurate reading during dialysis anyways. However, they ARE seeing that he's now maintaining his counts, which means the internal bleeding has all but stopped, so he shouldn't require another transfusion. Again, the boggest concern NOW is the hypertension. His blood pressure gets CRAZY high last at night, until he gets the b.p. meds, or he starts the dialysis. Stroke is the number one concern with his pressures the way they are. They are doing a good job of keeping it down, but it makes me nervous as hell to see how high it gets.

The Docs also decided yesterday to take ALL food away for the next 5 days or so to give his stomach a chance to completely heal. He's still in pain & vomiting from the colitis, so they want to fix that once & for all. He's getting all his nutrition through an IV solution & lipid drip.

Baby steps, but again - we think we're starting down the right road. Finally.

Nurse told me today that he'll have to be put on Methadone because he's been on narcotics for over 7 days. Guess if they suddenly STOP them, he'll have withdrawal symptoms. I never knew that. Sure, he's been getting morphine, dilaudid, and a host of other great stuff, but Methadone? I thought that was just for junki....Heyyyyyyy!

Yup. My kid's gotta go through detox after all THIS. Man.

Well, though it might be hard to tell, I'm in a bit lighter mood. Happy to see a bit of progress, even though it's about a week later than we were hoping, but the Doc told me (confidentially) that he's gonna push to have Nik home by X-Mas. He told Mom yesterday that he WOULDN'T be. Doc asked me not to say anything to her yet. Sneaky S.O.B.

Well, feeling better about things, but still a long way to go, so I'll update again with any more improvements.

Thanks all ~ Your thoughts, prayers and virgin sacrifices appear to be working.

Don't stop 'em YET!

Tom / PM
post #41 of 57
We forgot the virgin sacrifices!

Ok, Fox, wanna volunteer?
post #42 of 57
Originally posted by Bonni:
We forgot the virgin sacrifices!

That's OK...taken care of.
post #43 of 57
Erik I can feel for you , as a parent we are very protective of our children but this is a huge step past skiing behind them .
My thoughts are with you and your family , stay strong and be proud !!!!
post #44 of 57
Here is the latest from over at Powder.


posted December 22, 2003 11:33 AM
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, 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 walk, 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!

"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
post #45 of 57
What a brave little trooper! Hug that boy for us! :
post #46 of 57
Thinking of your family today, and wishing the best your way, Erik.
post #47 of 57
Yes indeed, you all are in our thought also. The Davis' hope you get the Christmas gift you are wishing for. Stay strong.
post #48 of 57
Erik, Nic and Family,
I hope that Nic is well on his way to being a happy, healthy little boy again and that the spirit of the season brought joy and happiness to you all. You were in my thoughts today.
post #49 of 57
Erik, the best of the season to you, your son, and all your loved ones.
post #50 of 57
Thanks for all the thoughts & Christmas wishes, everyone ~ Updates frmo the last couple days:

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.

post #51 of 57
Nothing new to report today, thank God! Nik's in good spirits, he's eating well, finally getting well hydrated..Labs are being drawn this morning & we should know by this afternoon whether or not we're starting to see some kidney function. We're getting whispers that there may be something going on, but the Docs are hesitant to give us any good news until they have a definitive answer. So hopefully....I'll have a nice update within the next day or 2..

post #52 of 57
We'll keep praying! Do let us know!
post #53 of 57
Thread Starter 
Here's the latest about EP's boy. It looks like he's probably coming home tmmrw, but there is a long hill ahead for him.

From: http://forum.powdermag.com/cgi-bin/u...1;t=023626;p=6

Hey all ~ Been holding off for a couple days hoping to post some better news, but here's what we've got:

Nik's probably coming home tomorrow, which is great, but his kidneys just haven't come back on the way the Docs were hoping or expecting. Yes, they will continue to heal & get better, but based on how his numbers look right now, he's going to need continued dialysis. We were obviously hoping he would only need periodic tests to keep an eye on things, but according to the Docs, his kidneys are only functioning at about 20%. That's only gonna buy us about 5-6 years if they stay at that level. IF we can get them to about 50%, we'll be ok for considerably longer, but even then, he'll have problems down the line, likely requiring transplant. Likewise, if they don't get better from where they are NOW, he'll likely require a transplant in the 5-6 years that I mentioned. As he gets bigger, his kidneys will obviously have a higher demand placed on them, and they're only BARELY maintaining decent levels NOW, let alone a few years from now.

The Docs were pretty firm about telling us that there's not a chance they'll come back at 70%. Theyre saying that if that WAS going to happen, it would have happened by now. So ~ the plan is to bring him home, get him back into a more comfortable environment, hope that the healing & progress continues and in the meantime ~ continue with the dialysis as needed.

We do have much to be thankful for, #1 being that we still have him with us. It was shaky there for quite a while. We also have hope that he will continue to get better. He's put up a hell of a fight for this long and made THIS much progress, so I'm confident that he'll do better once he's back home. When and IF the time comes, Mom is able to donate a kidney, so that puts us a bit ahead of the game.

Life changing events for ALL of us, to be sure, but we'll make changes, and just roll with things. As the Doc said yesterday ~ we can't fight with the guy upstairs. All we can do is make the best hand of the cards he deals us.

They haven't decided whether to leave the lines in his chest, OR to install a new PD line. Because of the problems we had with the PD line early on, they told us that they would have to basically do a liposuction to remove all the fat from around his stomach, so we don't have the problems like we did before. The advantage of THAT is that it's something we can do at home. We wouldn't need to make trips to the Hospital or clinic a couple times a week. If they DO leave the chest lines in for hemodialysis, there's a clinic close to where we live, and Nik's doc is there twice a week, so we're comfortable going there instead of driving all the way down to D.C.

So ~ tomorrow, we'll get schooled on his new diet: Low sodium, low phosphate, low protein. Yuk. I can cook, but obviously, I'll need to change my STYLE of cooking. We'll have to monitor his blood pressure, and he'll need to continue his blood pressure / hypertensive meds, so we'll get trained on that too.

Still got a long way to go, but with a bit of luck, we're hoping to beat this thing at LEAST to a point where Nik can maintain a prety normal lifestyle. We were hoping for MORE, but we'll take what we've got.

Thanks again, everyone ~ I'll update with any changes or good news as we go along.

skiski ~ My prayers go out to you as well. Keep up the fight. It's amazing how LOVE can make such a big difference is someone's attitude & recovery. Stay strong.
post #54 of 57
EPSkis, my thoughts and well wishes continue to be with you and your family. I cannot begin to imagine the emotional roller coaster you have been on.

On a practical note, I am guessing in addition to all that you face there must be a financial burden as well. Has there been any type of fund set up for Nik to help with his continued care? I for one would like to help if it is needed.
post #55 of 57
I will continue to pray for a miracle with your son.

I would also like to help ($) if it is needed.
post #56 of 57
Please lets us know if there is a fund set up.

Good Luck
post #57 of 57
Count me in for $$. It's one way to help and show there are caring folks behind you.

Give that little Trooper a loving squeeze for me. He's amazing!
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