Inside ISAIAH.....

Back to school

2011-11-07T18:29:00.001-06:00

well he made it a half a day at school. lots to catch up on, but he was a little tired and needed a break. full day tomorrow and labs again on wednesday.

And we're home again!

2011-11-02T21:38:00.002-05:00

They decided just to watch him over the 48hour period and have let us come home. Thank you, Lord! The boy is looking pretty good and is getting back to normal. We have a few things to clear up before he returns to school on Monday, but overall nothing we haven't dealt with in the past. Thank you all again for the support. He is a resilient boy!

To scope or not to scope...

2011-10-31T22:02:00.001-05:00

well, they have decided not to scope ike today. we were ready for it, but since he seems to be recovering so well they dont want to be as invasive as we thought. so now he is under two day observation and making sure his gut is working well. they will just watch his blood work and make a determination on thursday. stay tuned... and sorry those who are commenting. the posts are being received but we are not able to get them posted.

Back in Omaha, but maybe not for long.

2011-10-30T19:30:00.000-05:00

doctors have looked the boy over and he is looking pretty good. they will have a scope and biopsy tomorrow and we can only hope and pray the organs have survived the infection. it is scheduled for tomorrow afternoon. if things go well, we may leave this week. if not, who knows. but we are in familiar company and our son is acting normal again.

back to omaha

2011-10-29T13:08:00.002-05:00

well we made it a while, but its back to omaha for a few days. it looks like we may be changing immunosuppresive drugs and biopsy. we will have to see how thi ngs go...

boy is doing well

2011-10-28T16:29:00.001-05:00

wow, what a difference twenty four hours makes. he is awake and we should be moving up to the sixth floor tonight... god is good all the time. thank you all for prayers and support.

He's off the vent.

2011-10-27T16:14:00.003-05:00

they just took him off the vent again, but he is awake and recognizing people in the room. he is trying to talk and ask for food and drinks. things looking good so far today but waiting on newest lab results. thank god for prayers and support.

Blood Dialysis

2011-10-26T17:16:00.002-05:00

Well, Isaiah was awake for a little while today. He still has the vent tube in his mouth, so he can't really talk, but he was sure trying to. He is having issues keeping his blood platelets up, so they are infusing new ones in a process called blood dialysis. It's a really big machine, but whatever keeps him stable we are all for. Labs still look good, so we are hoping the transplant is still doing well.

Further updates as things progress, but he seems to be doing OK for now.

back on the vent

2011-10-25T09:49:00.002-05:00

he had to be put back on vent. pretty hairy last night but has settled down and is stable again.

Kidneys are awake

2011-10-23T08:55:00.001-05:00

isaiah kidneys put a lot of output last night. he dumped almost a lter and a half? this is good news as well as he is starting to get agitated. hopefully he will wake up soon and we can get him off the vent.... keep praying.

Isaiah is Septic

2011-10-21T16:51:00.002-05:00

Bad news on the home front. After a weekend at Worlds of Fun and riding his first roller coasters, Isaiah ended up sick on Monday at 4am. We took him in due to 103* temp and it has been a roller coaster week. He had to be put on the ventilator Tuesday at 1am, but has been more stable as the week has gone on. He was identified with strep, but the sudden onset caused the medical staff to check him for meningitis, which was negative. He is still on the vent 4 days later and they are currently working to make sure his kidneys aren't shutting down. He's been through this type of thing before, but it was usually because of having a central line. This was all just so sudden and really has us all on edge. Please continue to pray. We're hoping there won't be long lasting effects to the transplant, but we had early word the pancreas may have stopped producing ... Will update as we can.

16 Months and counting

2011-01-07T23:23:00.000-06:00

Quite the ham-bone as we start the next part of the year. He's managing well in school and everyone had an excellent Christmas break. Family in town, Ike was in good spirits, and no Omaha. So I guess we can start a new streak of "not" being there for Christmas. He's looking a little dry, but so far the labs have been good. So going to increase some fluids and see how things go. Short and sweet, but in this day and age that is a good thing! God Bless everyone and have an awesome New Year!

Christmas is Coming!

2010-12-05T21:41:00.002-06:00

Hello, all. Just a few pictures of the boy down on Crown Center. We took a day to run around making those Christmas lists and enjoy being out and about. As you can see, he looks pretty happy today. Sure feels weird not being in Omaha for the Holidays, but I guess 1 out of three years is not bad!

November Update - we're on a break!

2010-11-08T00:00:00.002-06:00

Hello, again. We've managed to get a 4 hour break from his feeds. Not much, but good for now! We're also on every other week labs. He was pretty excited not to be stuck every week now.

Just got to work on changing the NG tube this week and we're set for another month!

Hi to all in Omaha! We've been getting a few updates here and there. Hope everyone is doing well and has an awesome Thanksgiving!

Quick Hello!

2010-10-06T11:56:00.002-05:00

Hello, again! Just our "normal" monthly update. How hard is that to say? What is normal when you have a transplant patient as a child? Well, so far this has been great. We still have our weekly labs, but we've been doing a much better job getting in and getting done. Hasn't been late to school all year so far! His identity is coming around. He's starting to notice what the kids can do and eat and how most are now passing him in height. We're trying to keep him as normal as possible. He got to go to two birthday parties last weekend and the before/after school routine is getting better. He really is starting to come into his own and it is my hope to keep him home as long as possible!

Howdy!

2010-09-06T17:36:00.002-05:00

Hello, all! Sorry we haven't updated in a while, but we've really been kind of quiet right now. Isaiah has started school and is now in the intermediate side (3rd-5th grade). All the teachers and counselors have been super nice. Most of the teachers we've talked with before since both Boo Boo and Tater have both been through the school. So it's a lot of familiar faces and everyone is familiar with Isaiah. Can't say enough for the small town atmosphere. We're constantly checking labs, and this past week we took 13 of them! We're at our year mark, so everyone is a little nervous as numbers continue to fluctuate - but we haven't been back to Omaha in 3 months. Keep those fingers crossed!

Update - Liver numbers still high

2010-07-22T12:01:00.002-05:00

Doesn't look too bad for being a sick kid! Here he is taking a pic with his sisters on better days. We've been lucky enough not to have had to return to Omaha, but I believe it is because they don't know what they want to do with him. It's frustrating and pleasant at the same time. Omaha is a wonderful host city and there is always plenty to do while we're there. We've made some good friends and the nurses are always happy to see him.

We're coming up to our year mark, which is a big thing - especially since we have 3 organs now instead of 1. God has directed us this far, and we're in it for the long haul so I think for now we'll enjoy the little things and let God direct the rest.

Auctions over - and just in time... Happy 4th!

2010-07-04T18:42:00.003-05:00

Good Game, All! I can't believe the auction did so well. Thank you, whomever you are and all those that made bids. GMM did a great job and I can't thank all of those who have been involved enough. Isaiah looks like he's headed back to Omaha this week as the numbers are really on a roller-coaster. We've got to get things settled down and the team doesn't have a plan at the moment. We've got a scan coming up this week of the entire mid-section. He just doesn't seem himself the last few days.

Just want to take a few moments and also say "Thanks" to the troops. My family also has a brother and family overseas and the 4th is always a good time to say we appreciate what you're doing.

Keep the prayers coming. Thanks.

Gamers for a Cause!

2010-06-26T19:01:00.002-05:00

Thanks to Brandon over at GMM Studios, we have another opportunity for helping the cause.

If you're a 40k fan and you're interested in bidding for a truly professionally painted army, this is an awesome deal. I had the models, Brandon had the time and skill, and Isaiah has the cause :)

Click on the picture to be linked to the Ebay. I can't thank Brandon enough for the help and work he put in.

Numbers are still high, but ...

2010-06-18T17:11:00.002-05:00

Biopsy was negative. So now what? He seems to be functioning OK. He's not feeling sick or run down any more than usual and we haven't changed any routines. But his Liver numbers are still 10x's what they're supposed to be, but the biopsy is negative? Really confused, and not a lot of options. We'll continue trudging along and hope for the best as things just keep getting cooky around this place... Or I should say par for the course.

Movie choices...

2010-06-16T08:25:00.003-05:00

So, we have a few hours to kill after 7am labs today and before the biopsy. So I ask Ike if he wants to go see Shrek or Prince of Persia. He informs me he would like to go see the new Selena Gomez movie instead because is looks funny .... Wow.

Back to Omaha - part III

2010-06-15T13:59:00.003-05:00

So, liver numbers have consistently run high over the last 10 days and we're on our way back to Omaha. There is a biopsy scheduled for tomorrow and we'll have to wait around a few days to see what they think is going on. Good thing is we're going up in the middle of the week, so we may get back by the weekend!

Bad news is he's got summer school scheduled for next week... Hope we're back.

Quick Update - Doing well

2010-06-03T23:23:00.003-05:00

Hello, all! Just a quick update to let everyone know we're getting along well. We just moved and school just got out for one very hectic week! We got to complete our monthly infusion here in KC this time as well, so we didn't have to run to Omaha just for an infusion. He's looking good, and finally gets to go swimming! He's very excited.

Home Again - Early!

2010-05-17T21:37:00.002-05:00

So, that was quick. We had planned for Isaiah to receive schooling and stay in Omaha for the whole month of May. Low and behold, God has other plans. Apparently the team was so impressed with his progress, they have sent us home. No outpatient, no more hospital food, nothing. He still has an open wound that will need teaching/care, his interal pump, and he has a few new stitches/wounds that need to heal - but we're home!

He really is an amazing little guy.

Sisters and Dogs are good for many things

2010-05-11T20:09:00.003-05:00

Here you can see big sister giving love and support as Isaiah just had his chest tube removed. He was very happy to see everyone this past weekend.
And here we see Ike playing with the therapy dogs tonight. He was in pretty good spirits today as school "officially" started, there were plenty of volunteers that came through, and he got to see the dogs tonight. Long day for him. I believe we can say we're officially on the 24 day plan.

So as long as his labs stay good and everything continues to work well, we'll be inpatient for 10 days and out patient for 14. Planning on being back home around June 1st, and nothing against Omaha - hopefully home for a while.

Getting Better - 1 tube down, many to go

2010-05-09T18:34:00.003-05:00

Well, he was awake when we started this picture but drifted off to la la land after his pain meds. He had the left naso tube taken out this afternoon so he was pretty happy about that. Seems like he is progressing well. He is sitting up by himself and using the toilet as needed. No details, but everything seems to be working. Labs have been as good as could be expected - even his liver numbers are coming back to earth. Always seems like something is way up or down after surgery, but he looks pretty good. He's ready to move out of PICU and should get his chest tube taken out tomorrow. It's always a good thing when we can take tubes away.

Quick Update

2010-05-08T20:36:00.001-05:00

As you can see, the boy is awake and aware of what's going on. He was very upset to see so many holes and tubes this time, but I told him we weren't going home with any of them except the ng so he thought that was OK. Lots of travel today as I went back and forth to KC to pick up supplies for the month haul. He's in pretty good spirits all things considered and he's really happy he will get to see his girls tomorrow and Mommy for Mother's Day.

When they say it's by the book...

2010-05-07T22:56:00.002-05:00

Something always goes wrong. So we were scheduled for take down at 1230. I got a call around 0830 saying they were ready for him. Great! We'll get the take down done, into recovery, and up to the floor and he'd be up and talking around dinner time!

Um, No. So they take him into Pre-Op around 0930 and I make my way up to the Peds floor to pack Isaiah's stuff. He's moving to the PICU due to having surgery - no big deal, same routine.

However, as I walked down to the PICU at almost 1000 I found three of the main surgeons for the Team outside of the PICU - one of which is scheduled (and so I thought was already there) to be in surgery with Ike. I get a phone call update about 10 or so minutes later stating the Surgeon is getting ready to start the take down and the central line is done.

Ok - fine. Moving on to about 1230 get a call stating we're all done and Isaiah is moving to recovery. Normally we wait till they call again because Isaiah isn't really awake and they're just monitoring him coming off anesthesia. I get another call around 130p saying he is up and calling for me, so I wander back to the PACU and find the boy wanting me and mommy and pain meds - all normal since this is the 6th major surgery we've had with Isaiah, as sad as it may sound this is all routine. We know what meds he's going to be given and for how long, which ones work best and give him the most comfort.

So, I find out during this time that the initial placement for his central line was going to be on his left side, but because he's had so many lines and developed scar tissue, it had to be placed on the right. Ok, so why am I being told this? Because - they punctured Isaiah's left lung with the first placement and now he has developed a pneumothorax - or an air pocket from the top of his lung partially collapsing. And we're just getting warmed up.

So for the next 30-45 minutes I get to witness Isaiah have to go back under anesthesia, get his left rib "opened" so they can insert a chest tube to relieve the air pocket. You can google pneumothorax and see the treatments/issues with this type of procedures - but I can tell you it was interesting. Four x-rays later, and we think we have it in the right spot.

So we finally get him through all of this and he wakes up around 330p. Up to the PICU to monitor recovery. So around 430p, the team feels like the chest tube needs to be flushed and checked again. Ok - so what do we find?

The chest tube from the top-down looks like it is in the perfect position. However, from the lateral view we find the tube has not even entered the chest and has found it's way to his back. I don't even know how to describe the whole thing. What I do know, is Isaiah is put back under sedation, the correct hole is made and the tube is placed again.

I'll stop now. Let's hope this is not a sign of how this recovery is going to go.

I admire Isaiah's strength. This boy has had a liver biopsy, a tube down each nostril, a chest tube placed (twice), a central line placed (twice), his intestine sutured and placed back in his body, and a catheter just for good measure all within the last 24hrs.

God be with him and his recovery.

And here comes the take down

2010-05-06T16:57:00.001-05:00

So after much consulting with the Elementary, teachers, and doctors - we've decided to have Isaiah's take down tomorrow. This is where the portion of his intestine that has been on the oustide of his body (stoma) gets put back in. Smaller surgery, but no less risky. There are plenty of things that can go wrong, but we're praying everything goes well.

He is scheduled for 1230 surgery, 2 day recovery, and then we will be in-patient for two weeks. He will be hooked back up to a central line and getting TPN feeds while his gut recovers and then we'll be moved to out-patient while he starts on formula/solid foods.

We tried to keep him in school for as long as possible, but with another week spent here this time it just seems like an uphill struggle. The school and hospital teacher were all really supportive as we try to get our little guy through 2nd grade and ready for 3rd. I can't say "Thank You" enough to everyone as it takes so much coordination to get everything done.

So I give you all a hearty "Welcome Back to Omaha!" as we continue our quest for recovery.

Ping Ponging Continues

2010-05-05T07:37:00.000-05:00

So, we made the late night trip last night to be here for labs and a liver biopsy today. His liver numbers are at their highest point I believe, so here we are again.

God bless the wife, as she didn't stay and went back home last night after dropping the boy and I off. So basically at this point they will do the biopsy, he will be admitted overnight for observation, and they will have preliminary results back tomorrow for rejection. If they are negative they will probably send us home Thr/Fri. If they are inconclusive, we'll be here the duration of the weekend and possibly next week.

Stay tuned.

And Back Home

2010-04-21T08:55:00.000-05:00

We did not have a good Omaha visit this week. Seems like there are too many things competing for Isaiah's attention. He's been in the hospital at least one week per month since we were released. The team doesn't want to put a port in due to infection issues, we don't want him in the hospital so he can get through 2nd grade. So we basically were discharged with nothing changed except his lab numbers looked better when we left. So now we're waiting to see how he does the next few months. The ostomy take down is still scheduled for June, but little Ike has to go to summer school to catch up on his math. I think we'll leave it up to God and do what He leads us to do...

What a Success!

2010-04-17T22:23:00.002-05:00

How awesome God is and how awesome his people are! We had a great time today meeting all of the Fire District and SHPD folks and their families. We just want to say "Thank You" to all the community who showed up and gave support for our little guy. As you can see, he loved the boots (though he's not moving very fast) and the framed "Officer for a Day" got a big smile.

Isaiah is doing rather well today. Maybe we come home tomorrow - Maybe we stay for another week. It's still up in the air but our little guy is very happy today!

And again, nothing changes

2010-04-16T17:24:00.002-05:00

It seems as if the team is in limbo mode (and I don't mean the dancing kind). He had a barium study done of his lower instestine to see how much is past his current ostomy. He currently has 11cm of small bowel and 10 cm of large intestine - that's it. We're talking meer inches of sections. So no one is sure how much it would help to have him get his take down now vs. coming home with a central port. Big concern there is he is so immuno-compremised a line infection could hurt him badly. So no one is sure of the best course of action.

Stay tuned. Next week should be more interesting!

No News is Blah!

2010-04-13T22:05:00.002-05:00

Sooo, we're hanging out while the team decides what to do. There is talk of a port for IV nutrition/hydration while we're at home and there is talk of doing the ostomy take down while we're here. We'd prefer to just get the port and have him back home to finish school. But no one has a good handle on his dumping/outputs right now, so we're in Limbo - which is never good.

Also, just as a reminder! The volleyball game is this Saturday! I hope you readers can all attend, as it doesn't look like we'll be there :(

We really appreciate everything and know that God will provide us with the right answer.

BACK IN OMAHA!!!

2010-04-10T22:22:00.002-05:00

Well, we're back in Omaha. Isaiah's liver numbers have never really come back down with all the at home interventions we could do. So a weekend full of labs, measuring outputs, and hospital behavior await. We just got up here and got checked in, so it's been a long day.

More updates to come, as well as possible Liver/Small bowel biopsy and x-ray's. Stay tuned.

We really hoped to be home for the fund raiser next weekend and hopefully we still will be. Isaiah doesn't have much luck, though as he's been in the hospital each time we've tried to do something . . .

Liver Numbers are up

2010-04-02T10:40:00.003-05:00

So, the trip yesterday was pretty uneventful. We had labs at 0730, Trip to Omaha 0800 - 1100, Cytogam infusion 1130 - 1500, Clinic appointment 1515 - 1630, and Trip back to KC 1700 - 2000...

Wow. Anyway, after all that we have found Ike's liver numbers are staying a bit too high for the teams liking. We're waiting on yesterdays results and seeing if they are going to want to do another liver biopsy - just in case. The Ostomy takedown is still being scheduled for June so we can get him through school. The biopsy will be an overnight stay, but for the most part should be pretty quick.

Stay tuned...

Coming in April

2010-03-23T23:16:00.001-05:00

We've managed to stay out of the hospital for a whole two weeks! He has his monthly follow-up on April 1st and we've been discussing his ostomy take down surgery. Looks like we'll be back in Omaha for the month of June for the surgery and recovery. Want to try and make it through school and give him a chance to be at one of his events!

Hope to see everyone at the volleyball game!

Calling all Vendors!

2010-03-11T09:21:00.000-06:00

Hello! To piggy back on the volleyball game, we've been notified there will also be an auction during the game. If there is anyone out there that has something they would like to donate, please give our contact people for the departments a call!

It would be most appreciated!

Battle of the Departments!

2010-03-11T00:34:00.003-06:00

Just received awesome news! The Spring Hill Police Department and Johnson County Fire District #2 will be squaring off in a volleyball game to contribute to Isaiah's fundraising! This is wonderful, and we would really like to thank everyone who has worked hard in getting this together.

I'll be leaving the flyer up until the event and posting more information as it becomes available. Come out if you can!

And we're admitted again - Children's this time

2010-03-09T11:27:00.003-06:00

So Ike came home sick yesterday and it was deja vu all over again from last week. He couldn't stop throwing up and his stomach hurt. Strangely reminiscent of some issues we had with the last transplant, but once again as soon as he got hooked up with some Zofran and IV fluid he was fine.

So he's staying at Children's for the next few days while we continue to run tests and get his feeds back up....

At least we didn't have to go back to Omaha, right?

And we're home again...

2010-03-01T09:01:00.000-06:00

So we've been "out" of Omaha for 8 weeks, but have had to return 3 times. Luckily it has not been due to any rejection issues. Still frustrating overall as it is a disruption to our schedule, but good to know things are still progressing well. And we only had to stay 4 days!

Good News / Bad News

2010-02-26T19:54:00.002-06:00

So this was our scene on the way up and most of yesterday. It didn't seem like he would stop vomiting the entire trip and was constantly in pain. It was very reminiscent of the pain he was in during March/April of last year when he had pancreatitis. But once we stopped his feeding (after 7 sticks to get his IV started!) and got some fluid going via IV, he seemed to be able to settle down.

So today was the big scope. I can't tell you how I hate these. Maybe I'm still worried about what happened last time, but the scope is always pretty telling right up front (eye-ball test is never usually wrong). So here is is as we prepared for the scope.

As you can see, he gets to watch while the do the scope. It's pretty cool to watch and get to see the inside of yourself; especially if you're an 8 year old boy. And once the scope started, we could tell the bowel was doing just fine. Now we still have to wait for the labs to come back, but I would dare say his bowel looked as good/better than most of the times I've witnessed. So now we're pushing to get his feeds back on target and tollerated. Hopefully we're just battling a bug, and we're about done. But as usual it takes a trip to Omaha, a week out of our schedule, and the futility of thinking we have things under control...

He seems to be doing well today, and I always thank God each day for each day.

Bad Labs - Back to Omaha

2010-02-25T13:48:00.002-06:00

Just a quick note that we're back to Omaha. He's been vomiting the last two days and his labs came back today in bad shape. Going in-patient for now. Hope to have better news tomorrow.

Stay tuned.

New Week - Same Story

2010-02-20T22:56:00.000-06:00

Had two sets of labs done again this week, and he is still dry... Very concerning at this point. So we stepped up the volume on his feeds and are pushing fluids. He seems to be very tired lately again, so we're trying to stay on top of the situation. He's pretty active, so when he slows down we really notice.

We have a big meal planned at Church tomorrow, so I'm pretty sure he'll be excited to see all of his friends. Keep praying, because I know we are. His next set of labs is on Monday.

A little dry...

2010-02-11T00:58:00.000-06:00

So today was the big Valentine's party and I was invited. So I ate lunch with the boys here. I can say for sure I do not envy the 2nd Grade teachers. That's a lot of sugar (not for Ike) for 7/8 yr olds :) Got a call today from the Team that Isaiah is running a bit dry. Getting some extra fluids into him over the next few days since they don't have school. Hopefully Friday's labs will be better.

Home again

2010-02-06T20:38:00.000-06:00

Here's the little angel at his best: asleep! They let us come home and now we're doing wound care here. It's not too bad, but his mobility is limited and the wound is right on his waistline. Boys hate to be inactive and he hasn't gone back to school just yet. I'll have a teaching day with the school nurse on Monday and hopefully he can make it through the whole day. We've been back to Omaha twice now in January, but each time was for something different and neither were in reference to the transplanted organs. We're hoping we can make it a whole month until his next check up...

Going to battle with 2 bugs

2010-02-02T12:26:00.000-06:00

The 48hr culture panel came back and we found out we're fighting 2 bugs from the abcess. There's a lot of "cillins" in there, so I won't bore you with the names. But Isaiah is trying to make the most of it for now. He's up and sitting in the chair and though he complains of pain every now and then, he is feeling better. Not a lot new here, except he's starting a new antibiotic (one he's had before) and things should progress as planned. This is about the "best" result we could have hoped for as there doesn't appear to be anything wrong with the transplanted organs. So we'll get through this part and hopefully be home end of this week/next week. It's never a one day visit to Omaha . . .

And we're done...

2010-01-31T19:56:00.000-06:00

Well, that went OK. Dr. Langnus stated he found a couple of old stitches from previous surgery that the body decided it didn't want there anymore. So after draining the pocket, he said things looked good. Now we're waiting on the lab/culture results to make sure we're treating with the correct anti-biotic and hopefully recovery will go well. Isaiah was in pretty good spirits considering. Ike said the pain he had now (after surgery) was much less than the pain before. More updates to come as more information becomes available.

Quick Update - Surgery

2010-01-31T18:18:00.000-06:00

Isaiah went in for surgery at 1800hrs. They discovered an abcess right above his bladder that they believe is causing the pain so they want to get it drained now. I'll post another update as I get the information.

And we're back to Omaha...

2010-01-31T16:34:00.000-06:00

As you can see, Isaiah is holding his "cup" close to prevent any misses as we journey back to Omaha. No word on what's going on, but Isaiah woke up around 3am and started vomiting and complaining of stomach pains. This is the first time since the transplant that we've had any issues like this one. Usually it is not a good sign when he is vomiting, so we're a little worried. We called the liver team at 6am to see what they wanted to do, and here we are traveling. We arrived around 1030am and got checked in. I haven't seen him in this much pain since the old transplant was removed and we were dealing with pancreatitis. He was given some anti-nausea and some adavan after we got into the clinic. He's really sore around the bottom of his original suture area and it's oozing, so there may be some infection brewing. We had a CT done as well as blood work, so hopefully we'll know something today, but more like tomorrow. Keep the prayers coming, and I'll update throught tomorrow unless something happens tonight.

Back to School!

2010-01-20T22:20:00.001-06:00

We're back home! We were told the growth was granuloma and wasn't serious at this point. Basically it looks like the small intestine was trying to "heal" itself as it's not supposed to be outside of the body. So the team removed the growth and now we're home. Seems like this week was longer than just 3 days so far . . . Other good news was Emily came by to see us! She looks really good. We were going to make the rounds on the ol' 6th floor, but we got the call we could go home (sorry guys!) Now if we can just get through 2nd grade math . . .

Quick Update: 1 more day

2010-01-19T09:38:00.000-06:00

He has completed his biopsy this morning, but Dr. Grant wants us to stay and wait for the pathology results. Nothing more to report, except the "nodes" have gotten bigger and are a patch now instead of the 4 individuals seen in the previous picture. Hopefully we'll have good news tomorrow and get the boy back in school!

T +13 and then . . .

2010-01-15T18:57:00.000-06:00

What are these? We discovered new little bumps on Isaiah's stoma tonight after changing his ostomy. I send these pictures along to the team today and they said they need to take a biopsy and get labs.

And just when things were getting back to "normal" (normal for us, that is). So instead of getting back to the routine this week, we're making plans on being in Omaha for at least Monday - Wednesday. Hopefully it is something we can treat at home, but not sure yet. Keep praying...

And we're home.

2010-01-05T22:39:00.000-06:00

No pictures today, but everyone is happy to be in their own beds! We were discharged today and have made it home prior to the next round of snow. School has been cancelled for tomorrow, so winter break has been extended by one day! This will give us time to work out his new schedule and to decompress the two car fulls of stuff. I guess you could say the "easy" part is over, as now we have to involve a few more people to help watch the little guy and keep us informed of how he is progressing. School will be the biggest new challenge, but he has quite a few people looking out for him there. We are in the process of transferring care to new providers here and we have follow-up appointments with his secondary care here at Children's.

God continues to watch over our little guy. He has made it through so much, and continues to improve. I would never have thought we would have made it back "early", almost 2 months earlier than last time (and we had to fight for that!). Now we just need to get back into a rhythm at home, and maybe we'll get to relax...

Merry Christmas and Happy New Year!

2010-01-02T13:51:00.001-06:00

Sorry the update is overdue, but we snuck home for Christmas Day! It was awesome. Isaiah was sooo happy to get to see all of his family over the holiday instead of having to stay in Omaha (no offense) :) We had a wonderful holiday and the Team let us go home for a couple of days for New Years.

We also got to find out - we may be coming home! (and I stress may)

Isaiah is scheduled to have another infusion on Monday of next week. We have to coordinate care and medications and then I think we'll get to go home just in time for school to start on the 6th! We've started the packing process this weekend and it's amazing to see all the stuff we've "gathered" since starting here back on August 31st. It's hard to believe it's been 4 months and going home seems so surreal.

We had one more surgery last week as well. They removed his ear tubes since they were clogged. So now he has patches that we'll wait to heal and follow up with his ENT at home. Thanks to everyone who helped out this week as well since I forgot his formula in Omaha. Everyone has done a great job making sure the boy has the supplies he needs.

The Marines can even save Santa!

2009-12-22T22:07:00.000-06:00

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.

Secret Santa's and Home

2009-12-19T22:09:00.000-06:00

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!

A special day

2009-12-16T23:41:00.000-06:00

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!

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

2009-12-15T01:13:00.000-06:00

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.

When it snows we wish for the Sun!

2009-12-08T19:24:00.000-06:00

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.

Pearl Harbor and the Life of a Mouse.

2009-12-07T00:19:00.000-06:00

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!

Community Blood Drive and Santa!

2009-12-03T21:44:00.000-06:00

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.

Live Link!

2009-12-01T09:47:00.002-06:00

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!

We're going to be on TV for Thanksgiving!

2009-11-25T20:15:00.000-06:00

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!

Trying to help others

2009-11-18T01:13:00.000-06:00

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 :)

Results are in:

2009-11-13T14:12:00.000-06:00

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.

New Friends, New Problems

2009-11-09T19:10:00.000-06:00

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.

Big Weekend

2009-11-08T21:36:00.001-06:00

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.

And we're FREE! Well, sorta.

2009-11-06T20:09:00.001-06:00

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

2009-11-06T00:27:00.001-06:00

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.

Surprise Visitor and another infection

2009-11-04T00:41:00.000-06:00

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.

Happy Halloween!

2009-10-30T13:50:00.000-05:00

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

Snake Eyes

2009-10-29T00:57:00.000-05:00

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.

All the Support and Influenza A...

2009-10-27T17:22:00.002-05:00

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!

May I present the Rooster . . .

2009-10-24T01:05:00.000-05:00

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.

It looks good, but still not acting right.

2009-10-21T12:34:00.000-05:00

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!

Quick Update - Virus is back

2009-10-20T13:39:00.000-05:00

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.

2009-10-17T18:27:00.000-05:00

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.

Friends come by.

2009-10-16T22:20:00.000-05:00

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!

Hello from Omaha!

2009-10-15T21:29:00.000-05:00

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.

And we're upstairs!

2009-10-09T23:15:00.000-05:00

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.

Halloween Comes Early

2009-10-07T21:04:00.000-05:00

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.

Making the comeback

2009-10-06T21:44:00.000-05:00

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.

Always something . . .

2009-10-03T20:18:00.000-05:00

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.

God is Awesome - and so is Johnny Test!

2009-10-02T17:36:00.000-05:00

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.

Much Better Day

2009-10-01T20:34:00.000-05:00

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!

Results are in . . .

2009-09-30T20:34:00.001-05:00

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!

New Scope and Biopsy

2009-09-29T17:17:00.000-05:00

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!

Tough 3 Days

2009-09-28T21:54:00.003-05:00

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.

And just as fast - Bad News

2009-09-27T15:50:00.002-05:00

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.

Quick update - better news.

2009-09-26T21:35:00.002-05:00

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

2009-09-25T21:02:00.006-05:00

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!

2009-09-24T13:56:00.003-05:00

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 . . .

2009-09-22T20:13:00.003-05:00

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

2009-09-20T18:38:00.002-05:00

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!

2009-09-18T19:01:00.002-05:00

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...

2009-09-17T23:49:00.003-05:00

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.

Medical Technology

2009-09-15T15:21:00.004-05:00

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.

School Day

2009-09-14T12:31:00.002-05:00

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.

Day 4 - On the road to recovery

2009-09-13T19:53:00.002-05:00

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.