or Connect
EpicSki › The Barking Bear Forums › EpicSki Community › Community Discussions & Forum News › EPSkis' 3 y.o. has a serious medical problem
New Posts  All Forums:Forum Nav:

EPSkis' 3 y.o. has a serious medical problem

post #1 of 57
My thoughts and prayers are with him, his son, his wife, their entire family and the medical staff that is working so hard for a positive outcome. Any disease like this is difficult at best, but when it involves such a youne child it is devastating.
post #2 of 57
Hang in there, Erik. You're a wonderful Dad to be strong for your son! It's the most challenging run you'll ever do......and so important.

I wish you all the best. It sounds like he's got the Best of Care Everywhere.
post #3 of 57
Our thoughts and best hopes are with you, Erik. We will pray for the best outcome.
post #4 of 57
Thread Starter 

EPSkis' 3 y.o. has a serious medical problem

The young son of an Epic participant, EPSkis (member #3334, in case anyone wants to PM him) from Ski Liberty, is seriously ill and in the hospital. Details are in a thread over on Powder.

I responded over there, but I think he would appreciate any good vibes sent from this community as well.

Tom / PM

[ December 07, 2003, 08:06 AM: Message edited by: PhysicsMan ]
post #5 of 57
Originally posted by EPSkis:
Hey all..
Haven't been around for a week or so & wanted to ask a favor of y'all. I'm not normally the praying kind, nor one to ask for anything, but in this case I'm making an exception. I'll try to summarize:

My 3yr. old son is in pretty bad shape. What started last Saturday as a fairly un-noteworthy trip to the local E.R. has turned into an absolute nightmare. We took him in because he was complaining about his stomach on Friday morning. As of Friday night, he couldn't keep any food or drink down. Saturday the ER Docs gave him an IV to get some fluids in him & sent us home saying it was a stomach virus, keep him hydrated & give him Tylenol for any discomfort, and a scrip for Donnatel - for stomach cramps.

Sunday was even worse, and at 9am Monday, while at our Pediatrician's office, he told us to take him immediately over to the Hospital. (Different one from Saturday). Turns out, the labs done on Saturday revealed that he had an extremely rare instance of E. Coli. A particular strain that in young children causes extreme kidney failure.

During the night on Monday, the Pediatric docs at the Hospital informed us that his levels were dropping to a point where they weren't comfortable with keeping him there & they wanted to transport him to Children's Hospital in D.C.
They transported him at about 1am Tuesday morning.

As of Tuesday night, he had gone into complete renal failure and we needed to get him prepped to start dialysis. Leaving out the more horrific details of what gone on in between, (blood clot in the dialysis line discovered 2 hrs. after the first surgery - life threatening.) he's since had 3 surgeries to get lines installed so we could start dialysis. As of right now, he stable and undergoing his first cycle of dialysis. The hope is that over the next couple days, the dialysis will clean his system of enough toxins that his kidneys will begin to function on their own again. I'll leave the alternatives out for now and keep my fingers crossed that that's what happens.

They've got him pretty knocked out because he's in a LOT of pain, but at least the lines are functioning normally now. I'm on my way back to the Hospital when I finish this post..I had to come home last night for some sleep because 3 days of no sleep and no shower apparently isn't good. The charge nurse literally pushed me out the door.

The favor I'm asking is this: If you could, please take a second to send a quick prayer. I've already had conversations with everyone I know who's watching from above and though it's against my stubborn and often abrasive nature, I'll take help from anyone who's willing to offer it at this point.
Well, got a bunch of voicemails to answer & cals to make. I'll update next time I can get to a computer..

Thanks all,
Originally posted by EPSkis:
Y'all are an amazing group. All I can say is "Thank You"...I can't begin to tell you what it means to come back & see the positive vibes. I'm blown away by the good stuff you're sending up. Hopefully, they're already starting to work their magic.

I'm switching bedside duty with the wife for tonight, I just got home after my 30hr shift with my little guy. He still in ICU, but the second Dialysis operation was successful and he's been on constant dialysis since about 11pm last night. His platelet counts are up, which is good, but for the most part, he's just been stabilized for now. He hasn't eaten for a week, so today they had to install a feeding tube. I was up with him all night last night trying to get ANY food into him I could, so we could try to avoid the tube, but he's just not able to do it. Kid normally eats like a horse, so watching him trying to chew a half inch square piece of mushy peach was about as much as EITHER of us could tolerate. Unfortunately, he was also unable to keep down his first feeding, so they have to cut down what they're giving him to start. The plan is to slowly increase his appetite so they we can remove the tube. It obviously going to take longer than we were hoping, but he's loving his chocolate milk, and I DID get him to share half a peanut butter cup with me that stayed down. (Doc said the calories & fat could only HELP.)

We're being told that it could take a week or longer to even SEE whether the kidneys are responding to the dialysis, so right now, we're playing the waiting game. It's hard. For 20 minutes of every hour, the poor kid's in agony while the fluid exchanges...It's a tough thing to watch your kid go through. He is a tough kid though. We have actually had a few laughs over the last couple days because he's about as pissed off at the situation as he can be. He's gone from one of the sweetest, most affectionate and obedient kids I've ever seen to a VERY demanding little snot...Of course, it's AMUSING us right now, let's hope he sheds it by the time he gets home. :

The Hospital staff is great, couldn't as for any better, and they've really taken to HIM too. They're always popping in during ALL hours of the day & night just to check in and see how he's doing..It means a lot. Of course, HE just sees the face of yet ANOTHER person who's stuck him with a needle, shoved something up his butt, or generally just pissed him off, but to Mom & Dad, it's nice to know he's being looked after so carefully.

Generally speaking, he showing signs of heading in the right direction, but it's WAY too early to make any sort of assessment yet. They Docs are saying to expect him to remain on constant dialysis for at least a week. If after that, his levels have come up, they'll remove him from dialysis and observe him for another couple days to make CERTAIN that his kidneys are capable of taking over.

So ~ keeping our fingers crossed, knocking on wood, and tossing salt over our shoulder, we're hoping to have him home by Christmas. It's all I want.

BTW ~ Talking to my Sis last nite, I mentioned that I'd asked some online friends for some prayers...I'll be damned if I didn't happen to look out the window and see SNOW! Finally! So please keep it up Maggots, and I do sincerely appreciate you taking the time to send the thoughts, prayers and wishes up for my son & my family. It truly does mean more than I can express.

Maggots and Magettes kick ass! Once more, I'll update as we learn more, sorry there isn't a whole lot to go on at the moment.

edit: I'm too tired & out of it to check my PM's at the moment, but I will check them and respond as SOON as I can. Thanks again.
Oh man! I have a three year old daughter. I cant imagine how hard this must be for you and your whole family. Hang in there and my family is praying for all y'alls. I know you and the WHOLE family will be out skiing before long and the little nipper will be right where he belongs, pestering dad for a new pair of way over priced skis that match his way over priced boot. These hard times seem to bring clarity to what really is important.

Mark (and the whole maddog family)
post #6 of 57
Erik - My prayers, and my families, are with you and yours.

Kids can amaze us with thier toughness and resiliency. I'll pray that yours does too!
post #7 of 57
Thinking of you & the family....
Hopefully the little one will be eating & then up & about soon ....
post #8 of 57
Wow, our prayers are with you and your family as well.

post #9 of 57
How frightening for you and your family. I hope to God your little guy comes home soon.
post #10 of 57
I have a young nephew who went thru something similar and I believe the support of his loving family and prayer are what pulled him out of it. Our thoughts and prayers are with you...
post #11 of 57
Ditto everyones thoughts and prayers. I hope all turns out well.
post #12 of 57
Thanks Tom, for pulling this over here. And thank you ALL for the kind words. It's been amazing to see everyone's positive responses. PLEASE keep them coming, Nik needs it NOW more than ever.

Sunday nite update here..

You know...I've had more broken bones, stitches, scope operations and knees rebuilt to last most people a COUPLE lifetimes. But watching your kid is pain like this is utterly indescribable.

Little guy just keeps saying he wants to get dressed & go home. I've never felt so helpless & useless in my entire life..Daddy can't kiss this one & make it go away. I'd trade anything to make that happen, but it won't. Lots of prayers, positive vibes and good Doctors are all I've got to rely on. Please take just a second to ask WHOEVER it is that keeps YOU strong...To help get him through this..

There's a bunch of folks at Powder, Epic and TGR wishing good things for Nik. It's great to see the online skiing community pulling for him. It means a lot ~ Seriously.

Again, thanks Tom and thanks Bears. I'll pop in again in a day or 2.

post #13 of 57
Here is the update as posted on Powder...

************************************************** *

Not a good night last night and rough day today.

We're having some ongoing problems with the dialysis, poor kid's swollen like a balloon. They're bringing him down for more x-rays to see if the catheter is blocked again. His platelet counts are now normal, but it doesn't appear his body is well enough to produce new red blood cells on it's own..

The Docs gave him a shot of iron & hormones to see if they can jumpstart the bone marrow into producing it. Next step is a transfusion, but we're hoping like hell we can avoid that. Spoke with Mom a few minutes ago & she told me that the kidney Specialist was on the phone & is now saying that we may have to keep him in ICU until we see things take a (definitive) positive step in the right direction.

This is a bitch, Maggots. PLEASE keep Nik in your thoughts and keep this bumped. It's a little emotional & mental relief to me that I can come home every couple nights & see all the good wishes here.

We were told that there is definitely some permanent kidney damage, but the amount of damage remains to be seen.
Docs keep insisting these things are just speedbumps on the road to recovery, but man, we're ready for some happy news.

Thanks Maggots. Feel like such a downer posting this stuff here, but hopefully one day VERY soon, it'll get much better.

Nik needs your prayers.....Please.


post #14 of 57
My thoughts and well wishes. Stay strong.
post #15 of 57
Although I am a father I cannot imagine the pain you and your family are going through. My heartfelt sympathy and prayers for you, your family, and especially your son. Make sure all of your family members take care of each other. Your son needs you strong.
post #16 of 57
Thread Starter 
EP - Let me re-extend the offer, our place near Columbia, MD is probably about half the distance to the hospital than your home in Frederick, so if you find that you or your wife are too tired to drive back, or we can help in any other way, please PM me. OK?

Obviously, we are rootin' for your family.

Tom / PM
post #17 of 57
Hey everyone, I just hopped over to the thread on Powder and there was another update left there today, so here it is:
Update before I head out again for the night..

Post from yesterday above.
I'm leaving out probably HALF of the finer details in these posts, but with so much info, it's tough to remember it all. One thing that was pointed out to me - I haven't been taking notes as we've been going through all this, so by documenting it HERE, it'll help me to have a record of events.

I'll know more once I can get to the Hospital & talk to the Docs myself, but apparently the iron shot they gave him went well. I didn't know this until yesterday, but apparently an iron shot can cause an anaphylactic reaction. Basically, a severe allergic reaction. Of course, when the shots are administered, there has to be a team standing by just in case there's a problem. It's unsettling to say the least. There's about a 1/1000 chance that there wold BE a reaction, but they have to be prepared. Another thing is that it's referred to as an "idiosyncratic reaction", which means that although there wasn't a reaction ONCE, doesn't mean there won't be one in the future. He's got to get a shot each day for the next 5 days in conjuntion with the hormones to stimulate red blood cell production.

The problem with the dialysis machine is this: It's computer controlled, so if it puts 200cc's IN, it expects to get at least 200cc's back OUT. Because his kidneys aren't working yet, he's retaining a lot of fluid. The machine kept going into alarm because it was only pulling about 160-170cc's back out. Until 2 nights ago, he was on MANUAL dialysis, so if the Nurses didn't see the amount they were expecting, they let him drain for another 10 minutes. The machine can't do that. Last night, they supposedly got it figured out, so at least THAT'S going ok. They also increased the solution to 4.25% dextrose FROM 1.5%, which will also draw excess fluids from his tissues..That should make him considerably more comfortable.

The Docs wanna try to keep the fedding tube going through the night so he's getting good nutrition at night, and turn it off during the day. Hopefully, that will help stimulate his appetite and we can start getting solid foods into him. Obviously, solid foods have a MUCH lower water content, which will also help with the excess fluids.

Here's an interesting twist ~ Right now, they're limiting his fluid intake to 300cc's per 24hrs. (He's VERY protective of his 2 bottles ~ 1 juice and 1 water. Boy, don't even TRY to move them, it pisses him off to no end.) As this progresses and his kidneys start turning back ON, his body will actually go into overdrive, because it suddenly becomes aware that it's been injured. His blood counts will skyrocket, and his kidneys will start OVERPROCESSING fluids - urine. Everyone's been telling us we'll never be so happy to see him PEE again, but then the problem switches around: Because his body is so amped up and OVERprocessing it, they'll have to control it with medication, and also start to give him VAST amounts of fluids to keep up with the kidneys trying to repair themselves. He can actually become DEHYDRATED again, causing further damage. The whole disease is nuts.

BTW - The NAME is the disease is called H.U.S., which stand for Hemolytic Uremic Syndrome.
It developed FROM the E.Coli infection, and is what has CAUSED all these complications, not the E.Coli itself. Someone asked above, and yes, the infection itself has basicaly run it's course & done it's damage. In easier terms ~ we've skinned up, bootpacked the ridge, and are now scoping out sweet lines.

No, I never did smuggle in the snowball, but when they moved his bed over near a window, he was all excited to sit up & see the snow. ANYTHING that makes him happy is a good thing. I'm going to bring his Sister in with me this afternoon, they haven't seen each other in a week. They miss each other terribly. Hopefully, it'll make him happier and give him something else to look forward to once he gets the hell out of the Hospital.

As horrible as this whole thing IS, the Resident Doc I was speaking with yesterday (Who, incidentally, was also a resident for the the Doc that's known as the LEADER is H.U.S research) told me that Niklas is actually quite fortunate, in that he contracted a somewhat MILD form. I find this amazingly hard to believe, but the numbers say that the disease is fatal to about 10% of kids that contract it, and most suffer lifelong damage to the kidneys, heart, brain, and a host of other organs & body functions. This COULD have been a lot worse. I feel for the Parents of kids who've gone BEYOND what we're going through, because this has been a ******* nightmare.

Well, it's my turn again tonight so hopefully, I'll be able to post some improvements for tomorrow.

PhysicsMan brought this topic over to Epic, and as most of you know, Endless took it to TGR, so we've gotten back a TON of positivity, good wishes, prayers and happy thoughts. Thanks ALL for keeping this up top while my son and our family is going through it. I do sincerely appreciate it. We've all seen folks go through some horrible things at various points in our lives, and this one is certainly at the top of MY list, so again - thanks to you all for the continued support and thoughts. Please keep 'em coming.

I'll update tomorrow,
I am praying for Nik's complete recovery. He and your entire family are in my thoughts. I hope seeing his sister helps lift his spirits.
post #18 of 57
I will keep your son and family in my thoughts and prayers! Be Well Nik!
post #19 of 57
Eric, although I've become a cynic, I once saw the healing power of prayer. I will pray to whatever gods might be for Niks recovery. Take care!
post #20 of 57
good luck to the family.
post #21 of 57
Erik, I'm very sorry to hear about your son's condition. You and your family have my best wishes for his recovery. Be thankful you are near a major metro area, and have access to MDs that treat many, many patients and have seen many, many complex illnesses.
post #22 of 57
Wow, this is hard to read.

I offer my very best wishes to the family and especially to little Nik.
post #23 of 57
How's it going today, Erik? I have thought about you and Nik all day. How is Mom, also? Especially thinking of her too. I hope no news here is good news.
post #24 of 57
EP, I first came across this at TGR which was linked to Powder.

I want to say my thoughts are with your little guy and I wish a speedy, safe and full recovery.
post #25 of 57
As a parent, this is tearing me apart.

Our thoughts and hopes are with you. We all will rejoice to read your message that tells us that Niklas has recovered.

Keep us posted. We want to know what's happening.
post #26 of 57
Many prayers are being said for you and your family, Erik. It sounds like your son has inherited your strength. Keep us posted as best you can.
post #27 of 57
Erik- I just came across this thread. I hope that your son is doing better each day. I have taken care of dozens of kids with HUS (we had a huge epidemic in the Pacific NW about 8 or 9 years ago, when I was a pedi ICU doc there- at least half of the patients in our unit (which was constantly full) were being dialyzed). As serious as this illness is, the overall prognosis is for complete recovery in 65-80%, depending on various risk factors, so have hope! Don't be too concerned about the problems with the PD cycling machine- as long as they can get effective dialysis with hand exchanges it will be fine. Has he needed plasmapheresis? That can be very effective if other therapies are not working as well as one would like.

I am sure that your son is in very good hands- DC Childrens is a great hospital with a world renowned ICU team and consultants as good as can be found anywhere. Continue to have hope and faith.
post #28 of 57
I'm a little concerned. Is everything all right, Erik? Has anyone heard anything?
post #29 of 57
Bonni - There's an update today on the Powder board.

The news seems good, but I think Erik's kind of beat. So here it is, on his behalf:

Tues ~ Thurs update:

I absolutely GOTTA get some rest, so I'll be brief.

Continued "speedbumps". As I mentioned above, we decided to ditch the PD. (Peritoneal Dialysis) His first round of hemodialysis went very well, we took a liter of fluid out of him. We did the same this morning ~ another liter. (Thursday)

Which means that the hemo IS working much more efficiently, but we're not getting the Lab results we were hoping for. His counts are still low, still losing too much blood, and he's still having extraordinary stomach pains. We did an ultrasound on his stomach last night, but it didn't reveal much other than a lot of air and fluid is his digestive system. We had to do a CT scan on him this afternoon to rule out a couple other suspects, but fortunately, it came back clean.The culprit SEEMS to be colitis, which is inflammation of the digestive tract ~ Intestines, stomach, bowels ~ and by God, when my boy does it, he does it right. So again - we're keeping our fingers crossed that it'll clear up in a couple days & that'll be one less thing to worry about. He did eat a couple bites of hot dog & macaroni n' cheese yesterday, which he kept down for several hours, but it came back up last night. They did another dialysis this morning, which went ok ( I could only bear to watch about 20 minutes of the 2 hour process. Seeing his heart rate bounce around like that was a bit much for me at this point.)

They decided to run him on a smaller hemo machine that runs continuously. (They refer to the big machine as the HOG.) This machine is much smaller, but will run 24/7 until his kidneys decide to show up for the party. In the meantime, they're also giving his stomach a couple days to clear up by shutting off his feeding tube & giving him a high-calorie solution through (yet another) IV. Kind of a neat process, considering they're trying to pull excess water OUT of him. But the machine does it all ~ Cleans his blood, gives him fresh red blood cells and pulls all the fluid, leaving behind only the caloric benefit of the solution. Heart breaking to watch, I'm due for a panic attack any day now, but interesting medicine nonetheless.

Momma just called & told me they had just removed the PD line from his stomach and the remaining fluid looked cleaner than they thought, so that's good news. We don't need an infection on top of everything else. She's there with her Parents, Nik's grandparents, and he's apparently MUCH happier & talkative than he's been yesterday or today. I'm hoping that will relieve some of his stomach pain. It's what's been causing him the MOST pain. Maybe between removing the PD line & the colitis clearing up in a couple days, his bright & happy personality will start coming back too.

One thing that did make Mom & I feel better ~ A couple of the Nurses were taling with us & they both agreed that Nik was one of the most secure kids they've ever seen in the ICU. He knows that we're never gone for long, but even if we have to step away for awhile, we'll be back soon. So I guess that's one thing I don't have to beat myself up over. Guess we've done at least THAT much to make him a better & stronger person. Knowing unconditional love is a good feeling.

He's also comfortable enough & confident enough to speak up if he needs something. The Nurses that get Nik for their shifts are always talking about what a trip he is. Last night while I stepped out for a smoke, he started calling "Nurse, Nurse" (in a cute 3yr old kinda way)... Well, he was watching his favorite movie, "Mighty Joe Young", (about a giant gorilla)and there's a scene where there's a Veterinarian taking care of Joe ~ Well, Nik wanted to point out to HIS nurse that there was a Nurse of TV taking care of Joe! He said "See? Nurse!"
She got quite a chuckle out of that..And it made me happy to see that he's his usual observant self. Amazing to watch, actually. Just by watching, he had actually figured out the PD routine. Knew that when the nurse came in & filled the bottle, the water was going to go in his tummy, and knew when the alarm went off that the water was coming out of his tummy & he was gonna fill up the bag. Of course, he explained this process to me one night while I was half asleep at his bedside. Kids are sharp little people....

Still fighting this nasty thing, but we're hopeful that our agressive attitude will pay off soon.

Thanks again all, I'll update again soon. So much for being brief. You should all be grateful I'm not leaving you voicemails.

edit: Tomorrow's my Birthday ~ Is is wierd to want a diaperfull of piss for one's birthday?
post #30 of 57
Happy Birthday, Erik, and I wish you many pissy diapers.
New Posts  All Forums:Forum Nav:
  Return Home
EpicSki › The Barking Bear Forums › EpicSki Community › Community Discussions & Forum News › EPSkis' 3 y.o. has a serious medical problem