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!

Howdy!

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

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!

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!

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 ...

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...

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

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

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!

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

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

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

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...

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

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

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

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!

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

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!

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!!!

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

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

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!

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!

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

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...

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

 

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

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

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...

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

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

 

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...

 

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

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...

 

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!

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

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 . . .

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.

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!

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.