Results

Today started early, and as usual we were the first to arrive down in radiology. The team seemed very optimistic as the barium moved its way through fairly quickly. However....I warned them (or should I say 'reminded' them of every other sbs Caed has ever had. He likes to take his time....get to know all the rad. staff and see them through to the end of the day. ;)) I did however pray that this time would be different. After hour #3....and the frustrated looks on their faces, I knew it wouldn't. Caed was a trooper though. Total sbs time today = 6.5 hrs

We finally were allowed a little over an hour to put a halt on the xrays, and go to our clinic appointment. Caed was SO excited to see his nurses and doctors. He loves them! In a nut shell....the visit was very positive. They said if they were just looking at his labs (or at least the ones that had come back), they would think they were those of a "normal" child. Which anyone who has been around Caed would probably 100% agree with. The plan of action now is to change his current formula to one that is higher in calories. (Neocate Junior) We will stay at the same rate and dosage. We will also cut one medication, and watch to see if there are any effects. If not...we will then slowly try to wean the Imodium. Their only "concern" is his weight. He hasn't gained like they wanted him to. Hopefully the new (stronger) formula will help. We will come back in 6 months.....assess everything, and then, MAYBE then...we can remove the tube!

We returned back down to radiology after our appointment and had a couple more x rays. Finally, they felt the barium had reached the finish line (his colon)! We asked the docs about the length of time for Caed's sbs, and they said they are not concerned with it. They said the horrid "s-word!" (stricture) But, said if he had one, that wouldn't necessarily be a bad thing right now. (slows everything down allowing for more absorption time) He doesn't have one however......thank you Jesus, but said by it taking so long...that is actually a good thing. OK...we'll take it! I guess with Caed's bowel length everyone (including radiologist) always assume it will go quick. Yet another sign of God's hand!

We weren't able to see Dr. M today (he was in a transplant), but saw another dr. we knew. This guy was great....no complaints whatsoever. BUT...he made some simple comments that really struck something in me.

"We just shake our heads when we look at Caed. There is no real medical answer as to how he is doing SO WELL considering the amount of bowel he has left. We would love to ask you guys what you have been doing, so we can tell other IRP patients. He just isn't the 'norm.'"

I sat there quietly listening, but later wished I would have stood up and shouted "I KNOW the answer!!!! I know WHY he is doing so well. It is only by the grace and mercy of our God."

I haven't been able to get his words out of my head. Those of us around Caed take his normalcy for granted. We forget what an incredible MIRACLE he is! And I think I am as guilty as anyone for giving the credit to his great doctors in Lubbock and the IRP here at UNMC. I guess it just humbles me once again when I hear the medical professionals say that #1...they didn't expect him to survive the volvulus, and #2....how they don't understand how he dodged the inevitable multi-organ transplant and is doing SO WELL today (only 2 years later).

Thank you Lord for this trip to NE. Thank you for the positive results from the doctors and tests. But, especially for gently reminding me of YOUR ABSOLUTE HEALING POWER! YOU....oh God....are our Deliverer.