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

Wednesday, September 30, 2009

Results are in . . .

And we're NEGATIVE for rejection!  Thank the Lord!  His kidneys are working overtime and he is very anxious to be getting those tubes out of his areas.  The vent will be taken out tomorrow morning, but we're not sure about the catheter.  They want to make sure things are working full-time.  So very good news for today.

We also received many letters and a picture today in the mail!  I can't tell you how happy he was to see all the mail and hear how everyone was pulling for him.  Thank you all!

Tuesday, September 29, 2009

New Scope and Biopsy

Things move pretty fast here in the PICU.  They decided to go ahead and see how the steroids worked today and did the scope and new biopsy.  Preliminary status - things look better.  Isaiah is more awake and his breathing/lungs and kidney function have again steadily improved.  We won't have biopsy results until late tomorrow afternoon.  It would be nice to be able to get rid of one potential problem and move on to tackling the next!

Monday, September 28, 2009

Tough 3 Days

Isaiah is set to be scoped on Wednesday for another biopsy and to confirm/deny that rejection has set in. We have basically come to the realization this is going to be a tough three days as we won't receive any news about the biopsy until at least Thursday afternoon. They have continued to treat the kidney's and are trying to get him to void more fluid from his body. His blood sugars spiked to 400 last night in response to the steroids. It just seems like every time we try to take care of one problem, the treatment causes another. But we've been through this before and Isaiah is still waking up a few times a day. The nurses were pretty impressed as the sedation medication he is on should keep him knocked out. But as we all know, he's a fighter. Sorry there are no pictures, but having to post pictures of him on the ventilator doesn't do him justice.

Sunday, September 27, 2009

And just as fast - Bad News

They scoped Isaiah today to see how the bowel was doing overall. The GI doctor stated he thought it looked like the bowel was in early stages of rejection as it was red, swollen, and irritated. The biopsy won't be ready until tomorrow morning/afternoon so it's too early to tell at the moment.

Coupled with his slow recovery, low platelet counts, pneumonia, and being yellow and this all spells trouble for out little boy. He has been awake a few times today and even smiled for Russ and Heather. Keep the prayers coming and I will try to get up to date information out as it becomes available.

Saturday, September 26, 2009

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.

Friday, September 25, 2009

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.

Thursday, September 24, 2009

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.

Tuesday, September 22, 2009

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!

Sunday, September 20, 2009

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!

Friday, September 18, 2009

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!

Thursday, September 17, 2009

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.

Tuesday, September 15, 2009

Medical Technology

Well, we had a new dressing put on today. It's a pretty cool application of a basic principle. I'm moving today's picture down a bit as it may/may not be graphic for some. Basically, Isaiah has been producing a lot of drainage with the regular dressing kits. So, wound care came in today and placed a "sponge" into/over the wound area. The sponge is then covered in an air tight dressing and is hooked up to a suction pump. The way it works keeps Isaiah's body dry, the dressing clean, and all the drainage is moved away from the body. Instead of having to be cleaned 2-3x's a day, he now only has to have this dressing changed once every other day. Better for him and the nurses.

His stoma and output looks really good. He has been off the morphine based pain killers for about 2 days now, so he's coming along well. Just gotta get him out of the bed and walking down the hallway.

Monday, September 14, 2009

School Day

Back to school on Monday! He was in the chair for most of the morning and is trying to do what he can to get back on schedule. The team rounded today and I found out a few things:
1) Dr. Dean doesn't scope unless necessary. So unless we're having issues he won't be scheduled for biopsy or scope.
2) Ike is still de-sating when the oxygen is taken off. It's odd because he does fine when he's asleep, and actually slept without the canula yesterday. But when he's awake he has to keep the canula on. He didn't like that.
3) Apparently the small bowel is our tell for how the organs are doing overall. The team said if the bowel is fine, then the liver and pancreas are OK too and there shouldn't be any concern unless there are issues with the bowel.

Overall, very good morning. He is getting up on his own and is starting to act more "isaiah" like. He also got the team to let him have 1oz of water an hour, so he's all over that.

Sunday, September 13, 2009

Day 4 - On the road to recovery

Sorry to hijack my wife's thread, but this is Dad.

More tests, more visitors, more recovery. It has been a slow road this time. Having been through 3 different surgeries of this type, Isaiah hasn't been up walking too much this time. We can normally see a big jump from Day 1 to Day 7, but we are on Day 4 and he is just now wanting to get out of the chair. It's normally just to get back into bed, but at least he is up. He is very tired but today marks the first day the medication hasn't made him feel like groundhogs day. He knows who is in his room, and he knows what the nurses are doing to him. We had both central line dressing changes and incision cleaning today and let's say he was not happy. It was a struggle with Jennifer and I just to do one dressing change.

God has really blessed him with a high pain tolerance as well as an awesome prayer and support system. We really appreciate everything everyone has done for our son.

Thursday, September 10, 2009

Still putting up the good fight...

He could have died yesterday, but he's still alive. His body has been through so much-he is hurting, sedated and on a ventilator-but he still tried to open his eyes and smile for a picture. It brought tears to my eyes, so I thought I should share this.
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Wednesday, September 9, 2009

Stable and waiting

Stable for now - his liver is still not functioning all the way yet , but the bleed has stopped. They will keep him on the ventilator until tomorrow now.

Praise God for watching out for our boy!

Tuesday, September 8, 2009


This is Jen's friend Jen updating her blog. That's what you get for giving me your password!

Isaiah has been matched with donor organs early this afternoon.

He will be receiveing a small bowel, liver & pancreas transplant starting at 11:30pm CST.

Surgery was suppose to be at 5pm then 8pm and has been pushed back.

This surgery will most likely take until noon tomorrow. This is a very risky surgery. Please keep this family, the surgeons & nurses in your prayers!

One of us will be updating this blog often! We all believe that God put this little guy on earth so that when he is older, he will spread the good news Jesus, his adoption and how JESUS HEALED HIM through 2 transplants!


Saturday, September 5, 2009

Feeling Better...

The girls and I got into Omaha last night and made a beeline for Isaiah's room in PICU. I had to take the picture fast, before anyone started arguing!!! Isaiah is feeling so much better and looking better too! His nurse said that they will re-evaluate him on Monday and decide if they are going to send him home or keep him there longer. What I learned is that the "Status 1" he has now is just for this week, while he is in PICU. After discharge, he will go back to being just plain old Isaiah, waiting for transplant. Really, that is fine with me. He is in good condition considering everything-we know everything will happen just as it's supposed to.

Isaiah was so happy to know that his puppy is right here in the same city. He have never been apart from Percy at night and we left him at Petsmart PetHotel here in Omaha. We are trying to figure out a way to sneak in a visit. Isaiah suggested that we wheel him and all of his IV pumps and monitors to the parking lot and he could meet up with Percy there. I'm thinking that's not the way to go, but I'm still working on it...
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Tuesday, September 1, 2009

Update for today...

Isaiah received a unit of blood last night which brought his hemoglobin up nicely. Then he started bleeding with renewed vigor today. He was scoped this afternoon and moved to PICU. He has bleeding ulcers. I am trying to imagine where ulcers are forming, since he doesn't really have any intestine left at all. This puts Isaiah as a status one on the transplant lists, which will hopefully move things a little faster for him.

Isaiah can't come home for at least a week...

Updates as they occur...