Our Fundraisers

#1 You can join Isaiah's FIGHT on facebook and donate with a debit/credit card. CLICK HERE TO GO TO ISAIAH'S CAUSE on facebook.

#2 You can mail a check to their church-write ISAIAH somewhere on envelope or in the memo of your check:

Lifestream Christian Church 204 East Main Street Gardner, KS 66030 Phone: 913-856-8088

Saturday, June 13, 2009

Back in the hospital...

So, Isaiah has been in the hospital since Tuesday. I know, very tardy in actually telling anyone.

He was (is?) bleeding somewhere internally and now his Gastric drain has been removed(long story). Sepsis vs. Peritonitis was initially suspected as the culprit, but looking at him today, he's just not sick enough...if that were the case, he would have been a lot closer to, uh, "you know", the whole permanent separation thing. For you medical junkies-in addition to acute infection and fever, hgb was 7.0 and dropping...He got packed red blood cells in Omaha on Thursday night and was feeling better on Friday. He should get a new drain placed this weekend or Monday. He's been on IV antibiotics since Tuesday so that has definitely helped out-Vanco and Cefepime does a body good, right?

When we are in Omaha-and it IS me this time-Aaron is home working, I either can't sleep or want to sleep constantly. Note: 3:30am posting time. Isaiah always seems to ease his way through all of this, so I've no reason to doubt that he will sail through again. But SO not fun. Life does not stop for illness, I've learned. Just thought since I was sitting here with nothing to do except listen to Boo snore, I would post and update everyone.

Tuesday, June 2, 2009

Watching the pot boil...

So the waiting begins. Isaiah will be listed tomorrow, June 3, on three separate lists. Liver, pancreas and small bowel. His kidney function is still good, but there is a possibility of having to add a kidney to the list. We met with the financial department as part of our transplant evaluation. With three organs being transplanted, it's a cool million dollars. $1,000,000.00-unbelievable. But my boy is priceless.

You know, it's really like waiting to have a baby. We will have bags packed and ready to go at any time. It could be two days, it could be a year. Who knows??? And then-living apart for at least six months begins (six months is the minimum-we are getting three organs so I doubt we will get easy time). I will come back here after the first few days and Aaron will stay in Omaha. We may even get to see each other once in awhile.

Isaiah and I finally had "the talk" about where his new parts are going to come from. He was getting upset about the delay in getting his transplant and wondered aloud what was taking so LOOOOONG. Of course he hadn't thought about where those organs come from. I explained that someone has to give those to him when they don't need them anymore. "We have to wait for someone to give you their parts and they have to be your same size", I said. "Will my friend ***** give me THEIR organs?", he asked. "No", I said. "How do you know??", he asked...I explained that his friend was still using their parts for now. I didn't think he needed to know that a child will die for him to get his new parts. Not yet, anyway. Maybe afterward. I heard him telling his sister later, "MOM SAID that I am going to have someone else's parts inside me after the transplant". As if he thought no one would believe him or we had played a cruel joke on him. Geez...

We did have a decent time in Omaha. It rained most of the time, but we tried so hard to enjoy ourselves anyway. If I can find the camera, I will add the pictures. After we returned home Friday, we went REALLY nuts and took the kids to Worlds of Fun. Isaiah was indebted with gratitude. I figured out how to keep his central line dry while we went on the Fury of the Nile. He thought I was some sort of miracle worker. The kid can't even take a bath or swim so it was a HUGE deal to go on the ride. Last year he wasn't quite tall enough and got dissed. We are just trying to enjoy as much as possible on each day. We know how hard things are going to be coming up. Brutal would be an understatement.

So, that was our big vacation for the summer. Five days of transplant diagnostics, Omaha Royals game, Omaha Zoo and WOF. I know, we live a life of excitement and intrigue, right???