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.