Please take note and keep bumped today

**truth** · 12-31-2003, 03:21 PM

Don't have all the info & exact numbers yet, but I'll have 'em later on. One of the Renal Docs came in this morning & spoke with Mom. They did see his creatinine levels elevate a little overnight, BUT - at a MUCH lower rate than they have been over the last few days. It's still high, but they decided to wait another day to see how his kidneys are working before they put him on dialysis again. This is the first time in 4 1/2 weeks he's gone 3 days without dialysis. So yep - that's GOOD news. Again, I'm reserving my joy until I know he's good to go HOME. Which, they now say ~ may be at the beginning of next week. He's still on his hypertensive, blood pressure & antiseizure meds, but he's handling them well.

Did find out some info the other night about "normal" pressures for a child his age: They SHOULD be from 80-112 over 60-80. Right NOW, his parameters are set for 135-80. Which is MUCH lower than they have been, despite how high it sounds / looks.

Over the last few weeks, they've been in the mid 130's-150's over low 100's, so it does give us a sign that there is definitely some kidney function returning. We did get ONE reading last night that had him at 80 / 60, so hopefully as the kidney function starts to kick in & his body can remove the toxins by itself, we'll see that hypertension / pressure start to come down quite a bit, as well as stablilize in normal ranges.

Sprite ~ Yes, we've got him back in a regular room now, thank GOD. At least we can now sleep on a pullout bed in his room instead of trying to sleep in the waiting room. Tonight's my night, so I get to ring in the New Year with m'boy. Maybe I'll get us some apple juice & we'll have a toast at Midnight. Nowhere else I'd rather be.

Just so my Sis doesn't think it's gone unnoticed:

Home cooked meals? Clean house? Closets & drawers full of clothes? Yup - my big Sis has been taking care of us this week. (Including babysitting duty!) "Smoky Spaghetti"" ~ who was it that mentioned bacon in their spaghetti? Not bad, I must say! Lemon chicken, broccoli fettucini, GOOD stuff! Thanks for the support & help, Kim! Love you!

I'll update with some details as I get 'em..

Thanks all ~ Have a Happy and SAFE New Years!

**detroit** · 01-01-2004, 02:04 AM

Hopping Nikki and your whole family have a good New year, and God be with you.

Prayers.

**mr_gyptian** · 01-01-2004, 02:32 AM

here's to nik havin' many a' #1, takin' a leak. drainin' the lizard, droppin' a knee on a soccer sideline, makin' yellow snow...

**detroit** · 01-02-2004, 02:42 PM

Happy Birthday Nik!!!!

**sandytheskier** · 01-02-2004, 07:29 PM

^ it up.

**Dexter Rutecki** · 01-05-2004, 12:23 AM

Bump for next update.

**Grange** · 01-05-2004, 11:30 AM

^

**seldon** · 01-05-2004, 11:49 AM

^^

**EPSkis** · 01-06-2004, 10:28 AM

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.

**truth** · 01-06-2004, 10:34 AM

Thanks for the update EP...as always maggot prayers are with you and your family.

**Grange** · 01-06-2004, 11:33 AM

Liposuction? Kids are getting cosmetic surgery earlier and earlier these days.

Great news I guess the light at the end of the tunnel is getting bigger. I'll continuing to say prayers for Nik.

**Canuk** · 01-06-2004, 11:48 AM

Great news that Nik will be able to come home soon. I will continue to keep him, as well as your whole family in my prayers.

I really admire the way that you have handled this whole thing. I can imagine it would be pretty easy to let yourself get very bitter about the circumstances - good on ya for not doing that.

In no time Nik's going to be back on the skis...I can't wait to get the report on that day!

**cololi** · 01-06-2004, 01:55 PM

Great news that Nik is coming home. Being home has a great healing power, for everyone.

**shamrockpow** · 01-06-2004, 02:18 PM

Sorry the new diagnosis wasn't as good as you hoped it would be, but with your positive outlook, good things are gonna happen. Just remember, the challenge isn't to look down the barrel of a gun and have no fear, the challenge is to deal with that fear. So far it sounds like you and your family are coping as best you can with an incredibly challenging situation. To you, Nik and your entire family: keep fighting!

**EPSkis** · 02-11-2004, 03:10 PM

Well ~ Been a long time since I updated! Some folks have asked recently, so here's the latest:

As of last week, Nik's kidney function was at almost 50% (47%, to be exact)!!!

Pretty amazing, considering that when we LEFT the Hospital, they were at about 19%-20%, and we were told that he'd be lucky to regain 30% function. He had his dialysis lines removed about 3 weeks ago, because his kidneys are now capable of clearing his system by themselves. He continues to need blood pressure medication, though not anywhere NEAR as much as he did while in the Hospital. As I mentioned several times along the way, I'm sure ~ when your kidneys aren't functioning at full capacity, high blood pressure is one of the results. Normal range for a kid his size & age are:

80-112 systolic over 50-80 diastolic.

Nik's are usually in the low 110's to mid 120's over low 80's. Not TOO bad considering. His diet is still "restricted", but he's finally able to eat MORE of the things he likes. Generally speaking, life has pretty much returned to normal for all of us. It's tough, because though he's looking and acting like he's back to normal, but ~ He's still got a ways to go.

The Docs have been so shocked at his progress that they're OVERLY reluctant to give us any sort of long-term prognosis. They're telling us that "assuming" his kidneys either maintain their current levels OR God willing ~ improve even more ~ that he will likely still require a transplant, but they CAN'T tell us when that might happen. Could be 5 years, could be 25 years. That's about the best range they are willing to give us right now. Of course, we're still hopeful that Nik's kidneys will keep right on healing and prove them ALL wrong.

So ~ we continue to have labs done about once a week, keep an eye on his diet & blood pressure & that's about it. Got a few pics that I intend to post somewhere (Finally got a cable modem at home this morning ~ Welcome to the 90's, eh?) ~ so once I have them up, I'll post 'em.

Considering where we were at in mid-December, we're grateful for anything the man upstairs is willing to give. Thanks again everyone, your thoughts, prayers, comments, etc. helped ALL of us. Someone must have been listening. I've shown my family & many friends this thread (Obviously along with the ones at PM & Epic) and nobody has failed to comment on what a great group of people there are here in these communities. Y'all made a difference when it mattered. Thanks for that.

Erik