Quick update - better news.

He was awake twice today for about 20 minutes and even wanted to try and play video games :-)

He is still under and the platelets haven't corrected themselves yet, but him waking up and wanting to sit up are encouraging signs. We hope to have better news tomorrow.

1 step forward, 2 steps back

So we started off with a lot of discoloration of the skin. This is just under his ostomy bag. We have been battling a loss of platelets and no kidney function now for 3 days. Last night was a long one as I was up all night waiting for labs and hoping the IVIG would help coat the replacement platelets but so far has been a lost cause. So with everything else we've been dealing with, his body is fighting itself and up until late night his breathing was labored at best. So now we're intubated:

Jennifer is here this weekend and brought up a puppy pal since Percy isn't allowed to come to Omaha. This will have to do for now as we wait for his body to reset, let the Lord heal, and continue to pray for a good recovery. I was up until 0830 this morning as there was a lot of excitement with putting the tube in, getting his labs done, and finding the right amount of pain control. I know the pictures only show part of the story, but he has really been struggling and we weren't sure he was going to make it last night. It's always easier to look at the situation after the fact, but I know there were many people praying for our little boy last night and I can only say the Lord was listening.

We have an ADDRESS!

I've receive a lot of requests for an address to send cards et al to Omaha. Well here it is:

Isaiah (or Aaron) Johnson

PO Box 6550

Omaha, NE 68106

We've had issues in the past with the hospital postal service "misplacing" items for extended periods of time. So if you have anything you'd like to send, please do so. Isaiah loves to get pictures and mail. It's lonely up here :-)

Anyway - labs are doing some funky things. We're currently experience kidney issues related to the prograf levels in his blood. Basically, his body has been under a lot of stress with the transplant and we're trying to get all the levels back to as close to normal as possible. And when one thing is out of whack, then it affects something else. So currently we've gotten his platelet count high enough that he will actually start coagulating again, but his FK levels are so high they're interfering with his kidneys.

He's also a bit yellow, which indicates there may also be a few issues with the new liver. . . .

He's trying to be a trooper but having to wear a mask, having 4 different lines coming out of the body, and having to be on monitor leads is having the desired 7 year old boy effect. So we'll keep praying and see what the team brings us next for options. Currently we're trying to tackle one issue at a time.

Virus has decided to join the party . . .

In one of our brighter moments today, we find Isaiah sitting and playing Trouble! with a couple of the Child Life volunteers. I was pretty exited to see this after last night and the fever we've been fighting for the last few days. He did have a pretty good day overall, but alas again tonight we're spiking a temp and it's all the tell-tale signs a virus has crept in. He's having blood work done just about every 8 hours and his white blood count has been up and down but over 50 for the better part of 3 days (normal range is 5-13). The wash Sunday night was supposed to help alleviate some of the infection issues, but it appears VRE is the preliminary bug we're fighting. He's had it before but with the way things look I'm looking at a Fri/Sat recovery. He's fighting hard, and a visit today from the Orth's and all the cards from his friends at Church really made his day. Thanks for the continued support!

No pics, More surgery

Well, Isaiah was having some up and down temps the last few days and his white blood count kept creeping up - so he just got finished with surgery again. The opened the incision again to wash the area and clear any infection. He also received 2 new central lines just to make sure they were not infected either.

He'll be hurting for the next few days, but overall the recovery is going OK. Since he doesn't have an immune system, it's important for them to control any hint of infection. Dr. Grant is awesome!

So we got out and about today. While he looks to be in pain at the moment, he has really had an awesome day today. Preliminary results show we might be up to the 6th Floor by the end of next week. So hopefully we'll have more good news forth coming. Prayers are continuing to work so keep them coming!

And we're walking...

It's taken a little while, but we had our first walk today. He's on the end of the hallway, so there's a nice 15ft area he can walk back and forth. As you can see by the picture, he's feeling better overall. Still have recovery issues, and he only got to walk once today but things seem to be on schedule and the doctors say he is doing well. Dr. Dean scoped him today. Everything seemed to look good and we should have initial biopsy results soon. Just trying to get some type of schedule down. I spoke to the IT employees for the hospital today. They won an ice cream social for donating the most school supplies to Ms. Eva and the school program. It was cool to get to share our appreciation for all the work they do to help Ms. Eva and helping all the kids on the units to stay on target for their school and home work. Overall, good day.