Last entry for now

We can't believe it's been almost 4 years since running this roller-coaster of a ride!  Isaiah has ended up getting his tube back out for the summer (for now) and hopefully is starting a fruitful journey into the next stage of his life.

At this point, we would like to thank everyone for their continued support and prayers during this journey and hopefully those of you who have touched us in so many ways receive more blessings than we could ever hope to repay.

As with anything overtime (and technology changes), many of our links are not working or have moved - so basically we are going to leave this site up as is for our own records and hopefully a good, spiritual read for others who may be starting this journey.

Another scare and repercussions

Another scare this past Friday.  Isaiah was up all night screaming and retching.  We went to Children's around 630a and found him to be severely dehydrated again...  This has continued to be an issue since we first took the tube out last year.  So, at this time he has the tube back in.  He was not very happy, but the pain he was experiencing Friday am was from his kidneys starting to shut down.  We were not admitted, but he has fluids running 24hrs a day.  This weekend, the poor fella didn't even get out of bed unless to the bathroom.  He did start to come around last night and did manage a shower, but still not talking very much and has occasional retching after he takes his meds.  He has spring break next week, so he's missing this week of school - which is going to put him behind again....

Quick Scare - and back home

Hello, all!  Well, Isaiah hadn't been feeling well probably the last few weeks.  But he didn't develop a fever so we weren't sure what to do.  On cue, Friday he developed a fever around 8pm and we're off to the hospital.  All the staff were super helpful and we found out one of the doctors from Omaha is now here!  Isaiah was diagnosed with Influenza - B, given a lot of fluid and everyone else in the family went to get Flu shots....  Thanks, Isaiah!  But no issues with the transplant - as always anytime Isaiah gets sick, a trip to the hospital is in order.  We didn't have to go to Omaha, but we've had to take a lot of time off work the last few weeks.  Hopefully he gets back to school soon!

Yearly Check-up

We took a trip up to Omaha for the yearly eval.  Boy looks good!  Kinda skinny, but he's been growing and gaining a little weight so he's doing OK!  And, notice no back pack.  He has been without NG tube for 6 weeks now.  He does have a healthy regimen of formula he has to drink, but he loves being mobile! 

Slow updates are a good thing

Hello, everyone!  I just wanted to put a quick update.  Sometimes when you don't hear anything, it's a good thing.  And since his last bout in October, things have been going well.  We're currently working on getting the tube taken out permanently - of course he has to help by eating/drinking.  But as he is getting older, I think he is starting to become more self aware of his limitations.  The tube is just another reminder of being dependant on others, and if it's one thing we know about Isaiah is he loves his independence!  So we have another follow-up appt next week and hopefully his drinking enough nutrin jr and water to stay hydrated.  Thank you all for the continued support!

Back to school

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!

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...

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.

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

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

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.

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

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

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

Kidneys are awake

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

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

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!

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!

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!

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!