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

Tuesday, December 22, 2009

The Marines can even save Santa!

Howdy, all!  Well we found the Marines can even save Santa if need be!  UNMC was visited today by Santa and quite a few of the Nation's finest.  Toy's for Tot's came through and made quite a few children's day as Santa took requests, handed out presents, and generally turned a weather bogged afternoon into an awesome day.  The ol' camera phone isn't the best, but I thought I'd try to share as many pictures as I could for this one.  Even the girls had a good time.

We even made the local TV circuit again!  Not sure if it's linked yet, but we'll be on KPTM FOX 42 for a short interview.

Saturday, December 19, 2009

Secret Santa's and Home

Family is definitely the most important thing that God has provided each and everyone of us.  I came across this picture from last year and it just reminded me about what we consider "home".  We have since sold the house this picture was taken in and added two dogs to the picture.  And we're all here in Omaha.  So we're not "home" as in where we live, but we are "home" as a family on this Christmas Holiday.  God works in mysterious ways to be sure.

Speaking of mysterious - we received some support from a Secret Santa today!  Most unexpected, but most appreciated!  Along with all of those who have donated through our pancake feed, softball tourney, Facebook page, and now through anonymous donation - Merry Christmas and God Bless!

Wednesday, December 16, 2009

A special day

So we had a great evening and found out good news!  Emily got to go home today!  That was totally unexpected for us and them.  She has made many advancements over the last few weeks.  She looks really good and has been very interactive the last few days.  Good for them!  Also, we got a visit from Santa!  Of course he had a few presents for the boy.  He gets to make the choice of dinner tomorrow for his Birthday.  Should be a good time!

Tuesday, December 15, 2009

Drama, Hives, and how fragile things are . . .

And we see what happens when we have an allergic reaction.  Apparently this is Isaiah's reaction to latex, though there is nothing we can identify in the room.  So, we've had to add a few more medications to help out.  We did end up pulling the central line (pictured here), but we also changed his enteral formula.  This ended up being a bad combination.  As it was - when we did replacement fluids we could send them right to his body via the central line.  After the central line is pulled, we have to do fluids through his enteral feeds.  Well - if he's actively dumping through his intestine this doesn't really help.

When we changed his formula on Friday, everything seemed to be going OK.  For his first 12 hours, he only dumped about 100ml.  Then he started losing fluid faster than what he was taking in.  Basically a normal day for Isaiah is to take in 2200ml of feeds from his tube plus whatever he eats for the day.  Then he will void out about 1000ml over the same 24hr period.  Saturday, he dumped out over 2000ml.  So after a few phone calls, a stop in his feeds, a run to the labs, and re-evaluation we got things settled down.  Sunday and today were much better, but this weekend just served as a reminder as to how fragile things still are.

Tuesday, December 8, 2009

When it snows we wish for the Sun!

Just in case you didn't believe the weather channel, it's snowing.  ALOT!  Here we see our favorite superhero enjoying mother natures first major snow of the midwest.  He is standing on the man hole for the garden outside the Lied Center.  This was at 1030 this morning.  At this time, when I look out the window I can no longer see any of the area's we cleared this morning nor can I see those garden lights in this picture.  Just need the wife and some hot chocolate and I'd be just fine!  Soo....  When you can't go outside, you find things to do inside.

Here we see Isaiah at the puppet show!  Emily is also here, though I have to say it has been a miracle for her the last few weeks.  She has gone from being in an extreme amount of pain and pressure on her brain to now riding a big wheel down the hallway!  It was an awesome sight, and she wanted to make sure Isaiah knew.  So we all came to the puppet show for a good time.  Believe it or not, I got to be the Star our puppeteer is holding in the picture.  We had quite the time.

Health wise, Ike is scheduled to get his central line taken out this Thursday.  This is a good/bad thing.  Good because they don't feel like he needs it.  Bad because now anytime they have to draw labs (2x a week right now) or give infusions, he has to be stuck.  This will create a new set of problems, but get rid of a port to inside of his body, thereby removing at least one additional way he could get sick.  Stay tuned, this next few weeks should get interesting.

Monday, December 7, 2009

Pearl Harbor and the Life of a Mouse.

Today is Pearl Harbor Day and another remembrance to a generation of families and descendants for those who served during WWII.  The boy and I will be visiting some of the local area's and memorials.  My Grandfather served with the 9th Armored Division in Germany.  God Bless all those families with members serving over this holiday season.

While we were out with the family, we visited a pet store.  Normally this is just a token visit to keep the kids busy and pass some time.  But we found something very interesting in a little tank....

Now it may look like they're running in different directions, but this is just the "pause" before the storm because what we found (and continued to provide many minutes of entertainment) was the black/white mouse was running while the tan mouse was trying to get off this crazy ride.  And if you think it was easy, check the next picture:

The "blur" on the top is the tan mouse hanging on for dear life!  The black/white just would not let him get off the wheel.  He tried several times, and each time he almost made it - his buddy decided it was time to run again!  Disclaimer:  No mice were harmed in the filming of these pictures!  Of course, Isaiah said that looked like fun . . .  Good times!

Thursday, December 3, 2009

Community Blood Drive and Santa!

Hello, everyone!  Here we see our boy visiting Bass Pro and telling Santa how I need to receive coal for Christmas.  Gotta love him.  We've had a great time this last week.

For those at home, we've added a new LINK!  Please click and sign up for a time to donate blood!  It's very important and only takes a few minutes.  And it goes to help everyone.  Isaiah has received quite a few transfusions.  I'm going to leave the link up so it's easy for everyone to sign up!  You can find more information about this great organization here.

Tuesday, December 1, 2009

Live Link!

WOW!  What a wonderful weekend treat!  We were able to be shown not only on KC/Omaha, but CNN picked up the story and it's available for viewing here:

Isaiah Goes Live!

This was a wonderful surprise.  I only wish his blog was on there :)

Check our boy out!  Don't watch me.  The camera has added a few pounds, not Thanksgiving!

I was also able to find out which stations showed the story on which days (so far) with some help from a really nice lady here at the hospital.

Nov. 26
KETV Omaha 5pm
KMBC (ABC) Kansas City 6pm
WDAF (Fox) Kansas City 9pm & 10pm

Nov. 27
KETV Omaha 6:30am
WFXG (Fox) Augusta, GA 9pm

Nov. 28
KMBC (ABC) Kansas City 7am & 8am
WDAF (Fox) Kansas City 7am & 8am
WMDT Salisbury, MD 10pm
WIVB Buffalo, NY 10pm

So if you live in any of these area's or know someone that does, point them in this direction to get more information!

Wednesday, November 25, 2009

We're going to be on TV for Thanksgiving!

We did an interview on Tuesday that is scheduled to be aired this Thanksgiving!  I also received word that the affiliate here is also owned by the same ABC station in Kansas City.  So you'll be able to see us in Omaha and KC!  Look for us on KETV 7 News here in Omaha, or KMBC 9 News in KC.  Not sure exactly what time, but they stated it should be either the 5, 6, or 10pm news.  Very exciting!

We've had a great weekend and some friends came up to see us.  We made our trip to the Zoo, a run through the Mall, and saw Planet 51.  Good times!

Wednesday, November 18, 2009

Trying to help others

So we visited a few friends that are still on the unit.  Emily was pretty happy to see Isaiah today.  We decided to help her paint her ceramic turkey for Thanksgiving.  Not sure I've seen many blue and yellow turkeys, but they had a great time.  Things are going well for now.  We're up to Day 11 on out-patient status and I can honestly say I'm glad we're out, but I hate his pumps!  Those things go off when ever/where ever (especially when you're sleeping) and take a bit of tinkering.  We have clinic again this week, but his labs have been good and I'm not hoping for any surprises.  The Boy has a birthday coming up and we're on a Bakugan kick.  I've tried it, and think of it like Poke'mon except with marbles.  Some of them are pretty cool, and he actually has to keep using his math to play the game - so I suppose it's a win-win :)

Friday, November 13, 2009

Results are in:

And the virus is causing the most problems right now.  We have received the biopsy results from both organs and everything is looking good.  The numbers are being attributed to the virus and we're just having to get through this stretch.  We now have a program in place to get him off the IV fluids and just on the enteral feeds only.  I think we can probably get this done within the next few weeks, but it will depend on his body and how it reacts to the changes.

Should be another good weekend!  He wants to see Astro Boy - so we'll check it out.

Monday, November 9, 2009

New Friends, New Problems

Here we find Ike being a ham for Little K.  As you can see, he is very happy to be out-patient and able to meet and play with new kids.  Little K is the daughter of a friend here in Omaha.  They played, got in trouble, and were generally able to keep each other entertained so the "adults" could have some play time :)

So, after such a great weekend we had the scope and labs this morning.  The scope looked fantastic, and everything was going great.  Then I received a phone call in regards to the labs.  Apparently, Isaiah's liver numbers have doubled (a bad thing) since he was released on Friday.  Not good news.  Also not good news is we get to have our first liver biopsy tomorrow.  Of course, Isaiah can't do things by the book.

It was supposed to be if the bowel was fine, then the liver and pancreas would be doing well.  So, we've blown that out of the water and now he will be put under tomorrow at 1300hrs for the first of what I will assume will be many over the next few months.  He got to the Zoo Saturday, playtime Sunday, and to the Park today.  We'll see how things go for the next few days.

Sunday, November 8, 2009

Big Weekend

So, little Ike had 2 requests for his first weekend.  1)  Get to the Zoo and 2) Go to Taco Bell.  Ah such simple things.  So we spent most of the day Saturday running around and watching the Gorilla's.  We sat down (as Ike needs to build his stamina a bit) and we see the mighty Gorilla picking his nose.  So while all of the other kids are fighting to get on to these statues, our boy is doing the following:

These kids - so impressionable.  He also got his Fiesta Potatoes tonight from Taco Bell.  He can't eat all the cheese, but he loves the potatoes and it's an easy request to fill.  We're in for an early morning tomorrow as we have to be down to Endoscopy by 0600.  Yuck.

Friday, November 6, 2009

And we're FREE! Well, sorta.

Here we see little Isaiah tired from the days events.  And notice we're not in a Hospital Room!  We're outpatient!  Almost a full month ahead of schedule.  Now what this means is I'm providing total care for our little cub.  Since we're out early, this means we have a rigorous schedule.  He has to receive all medications at 0900/2100 hrs, he currently still has an open incision site being changed 3x day, he is on TPN (IV nutrition), Enteral Feeds (nose tube), and has now been diagnosed with Adno- & Norwalk virus.  And I was told today he may be in the beginning stages of rejection - though virus can mimic the symptoms so we won't know until Monday what's really happening since -> He's getting another SCOPE!  Yay!

It was a lot of information to digest today and we had to move out of his room into ours.  Not a whole lot of space available at the moment.  Keep praying.  We hope to go to the Zoo tomorrow.

Two Q-Balls

So we got a haircut.  What can I say?  He's very convincing.  Things have been going well, and I think we may move this weekend into the Lied Room.  It's always subject to change, but if it occur's it would be a great step towards getting home ahead of schedule.  Stay tuned as we may have better news tomorrow.

Wednesday, November 4, 2009

Surprise Visitor and another infection

Well, we had a surprise visit from one of Isaiah's friends from the last round of transplants.  It was funny, because Isaiah had just written a letter to him as part of his school work and he showed up the same day!  Funny how God works sometimes.  We are also still battling an infection in his stomach suture.  Probably take  a few more days of dressing changes, but looks like we "might" be outpatient early next week.  I've said it before, and it seems to jinx the process but things are looking better at the moment.

Friday, October 30, 2009

Happy Halloween!

The pictures from today and yesterday's adventure are up and in the slide show to the right!  Our boy did quite well.

Thursday, October 29, 2009

Snake Eyes

So here we find the boy in his "costume" for Halloween.  Child Life is setting up some "trick or treats" on each of the floors for the next few days.  He is still on isolation for tomorrow, but for all those kids stuck like us they are having a "reverse" trick or treat.  Basically, the nurses are coming around to the rooms and giving items to the kids.  Then on Friday we'll have a parade of costumes and get to go to the different nurses stations.  No concentrated sugar for the boy, so he'll get the nick-nacks and I'll be gaining a few pounds.  Good times.

Tuesday, October 27, 2009

All the Support and Influenza A...

This was sent to us from a class in California!  This is just one example of some of the support we have received over the last few months.  He really enjoys getting the cards and pictures because he can actually see those that are writing the letters.

This week has been a mix of news.  We've found out he tested positive for Influenza A - which is the family of flu that H1N1 belongs to.  He doesn't have it, that we know of - but just being given the diagnosis has brought it's own challenges for him and me.  We're both basically on quarantine until this Friday!  So I've limited myself to the Lied Room and his room, and I now am wearing a mask through the wing to make sure nothing gets out of hand.

As always, thanks for everything!  We'll continue to update as things come along.  Isaiah is very excited to get off isolation just in time for Halloween!

Saturday, October 24, 2009

May I present the Rooster . . .

So here we see the boy and his new hairstyle.  And we also see a few visitors that have come up to fawn over the little one.  It was a very good evening getting some old stories out and everyone laughing.  The visitors are coming back again tomorrow, so hopefully we'll get a few more good pictures and get the boy outside for the first time in about 2 months.  Little things, a little at a time.

Wednesday, October 21, 2009

It looks good, but still not acting right.

So the bowel actually looks OK.  He's still dumping though, and that means more time to get everything settled and him back on track.  Like we've said - it's always something, but at least this hasn't damaged anything they can tell so far.  More pictures coming soon!

Tuesday, October 20, 2009

Quick Update - Virus is back

Well our few days without issues are over.  Isaiah is up to be scoped today as we've found out he has an Adenovirus affecting his outputs.  This is bad as this particular virus can cause inflammation of the new bowel or help cause rejection.  They've been replacing fluids, which is just about all they can do for now.  This is just a testament to how fast things can change, as he had a scope on Friday evening and everything looked good.  Hopefully we'll have results today after 3pm.

Saturday, October 17, 2009

So, we're camping today!  We had our daily ration of bacon and we set-up our "tent" and Ike is camping tonight.  He's got the TV and remote and 3 hours of cartoon network coming up.  He is doing very well.

Friday, October 16, 2009

Friends come by.

So we had some visitors come by today.  It was good to see Isaiah interact and seem to act like himself.  He had a scope today as his output has been a little high and they are watching him closely.  Dr. Dean said everything still looks great and the pics he made looked good too!  We look to have another good weekend, and who knows where we may be next week!

Thursday, October 15, 2009

Hello from Omaha!

Hello, all.  Things have been going very well, so I didn't want to jinx it by posting early :-)  Isaiah is on solid foods, though he is pretty much just eating lunch meat, baked dorito's, and a piece of bacon daily!  His feeds are up, his attitude has been great, and he's looking really good.  He's homesick and missing his puppy, so I had more pictures taken and sent so I could print them off.  It's too bad Percy can't come up and visit :-(

Praise be to God, things are going well.

Friday, October 9, 2009

And we're upstairs!

We finally got to make the move upstairs today.  No pictures, but it's very nice and give us a lot more room to work.  He's pretty happy and the doctors were impressed with the recovery so far.  He's running a low grade temp today, so that's being watched.  He started tube feeds today too, so we've got quite a few things moving.

And for another great news update:  Emile is doing well!  We actually got to stop by her room today and talk with her!  This is a major upgrade as she has been pretty sedated over the last few days.  Emile and Ike even went to Pet Therapy together today.

Today was a good day.

Wednesday, October 7, 2009

Halloween Comes Early

So we decided to put a little color in his hair again and decorate the room.  I didn't want to at first because if we move upstairs this weekend, we have to pack it all up again!  But we did it and he was pretty excited.  Things are going pretty well, though he is now "dry".  It's funny as we kept trying to get him to put off fluid for the longest time, and now we're trying to get him hydrated!  Oh well.  He's in a great mood and has rarely been in his room.  Childlife has done a wonderful job keeping him busy.  He's been downgraded and can leave the unit, so he's been taking full advantage of it.  It was good to see him more like himself today.

Tuesday, October 6, 2009

Making the comeback

Isaiah has been doing quite well the last couple of days.  His labs are good, he's off the oxygen, and he is up and moving around.  I sincerely hope we can start the process of recovery now.  It is frustrating for little things to keep happening, and it starts the process all over.  But he's having a really good start to the week and we're very happy!

Emile had a really rough last 24 hours.  All I can say is please keep them both in your prayers as we continue on this week.

Saturday, October 3, 2009

Always something . . .

There just always has to be something.  So the last 24 hours were going "too" good.  I took this picture around noon today.  By 2pm, Isaiah started vomiting and having pain in his stomach area.  The last time this occurred, he had developed an abscess of fluid in his abdominal area.  So we'll wait until Monday probably to do new x-rays/CT to see what's happening.  We were trying to ween him from some of his pain meds and suction on his gut, but we've had to hold back and continue treatment as usual.

Isaiah's friend Emile is in real need of prayer support right now.  She is having ICP, or inter-cranial pressure, and it is at dangerous levels right now.  She is scheduled to have a drain put in on Monday but is in a lot of pain right now.  Please hold her an her parents up right now.  They really need the support.

Friday, October 2, 2009

God is Awesome - and so is Johnny Test!

So today has been totally awesome!  He is up, walking around (as far as his tubes will let him), in a great mood, and eating ice chips.  He got a hair cut, played a game, and did all his physical therapy.  It is truly amazing to see how fast the human body can respond.  He is not totally off the oxygen yet, but we think this will occur by Sunday.  Then it is recovery time and hopefully up to the 6th floor by next weekend.

We received MANY letters today from friends and family from Church and School!  Thank you very much 2nd Grade!  When Isaiah was here for his 1st transplant, he was Ang the Airbender (which is a movie coming next year I think - always a step ahead, that boy).  This year, we're Johnny Test - a new cartoon on Cartoon Network.  This is the flaming boys hair that we are now sporting:

And here's our boy:

Good times!  He'll have a little more red tomorrow.  He just got the first tinge today.

Thursday, October 1, 2009

Much Better Day

We've had a very good day today.  The tube came out of his lungs, and we had a pretty tense few hours getting him breathing on his own again.  But by the end of tonight, he was talking and eating ice while watching cartoons.
We hope to have him sitting up in the chair and moving around a lot more tomorrow and hopefully walking this weekend.  We'll see.

While we've been in and out of Omaha throughout the last 3 years, we've come to know a lot of the families that have come through the program.  One of Isaiah's friend's Emile had a kidney transplant and has gone back and forth from the PICU to the Children's floor just since we've been here.  I'd ask all those praying for Isaiah, please keep her in your prayers as well.  She has a very supportive family, but every bit helps.

New pictures tomorrow!

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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