The Schindewolf Squad: Another update

Friday, April 12, 2013

Another update

Yesterday we went for our GI appointment. It went really well and we learned that the doctor wants to run a couple more tests. The first one will be on Tuesday morning. It will be an endoscopy procedure. Basically, tucker will be put under general anesthesia then she will go in with a scope and camera and look on the inside of Tucker's esophagus to see if there are any ulcers or something going on in the lining that would cause swallowing difficulties. It is an outpatient procedure, as long as tucker comes out of anesthesia ok. Otherwise we would have to stay over night. So please pray that all goes ok!

The second test is an "empty stomach" test. It is basically a test using an x-ray to see and make sure that Tucker's stomach is emptying like it should. That one is scheduled for the following week.

We also got the ball rolling again to get Tucker's OT started. It has been such a horrible process all due to one questionable evaluator! But I have been relentless and pushing forward. 2 of his doctors and now the GI are all on board and agree that the evaluation was questionable. After talking with my insurance company, several doctors and several supervisors, we are hoping to get started again this week. Please pray that this happens! So many technicalities!!

As for the NG tube, we will have to keep it in as long as he's not getting nutrition another way. I am currently working on trying to get him to drink pediasure or boost. The doctor yesterday told us how much we would need him to drink by mouth in order to take tube out while we work with the OT. I have been putting little bits in his milk to try and get him to acquire a taste for it, so far so good! Again, please pray he will take it by mouth!

If we cannot get him to drink it by mouth and our OT (after working with him) thinks its going to be a while before we can get him to swallow food, then we will have to look into getting a G-tube. The G-tube is a tube the comes out of his stomach and is surgically placed. It sounds worse than it is apparently, and can be taken out as well. Obviously we would prefer that he didn't have to have any tubes, but if it is going to be a longer period the G-tube is the way to go. So it is essential that we see an OT ASAP, because a lot of these decisions depend on their assessment and work with him.

So that is where we are. Slowly getting there. It has been a rough ride, but I have been praying for peace and guidance throughout this process and have sure been feeling lots of your prayers as well so thank you!

Last week, tucker pulled his tube out! I was originally told by my pediatrician that I could bring him there and he would do it for me. Well the day it happened he wasn't there and the other doctors didn't feel comfortable and said it was against protocol. There went my safety net! My dad and I tried to do it since Carl was at work and it was traumatizing!! So wonderful cousin Amy (who is a nurse) graciously came out to help and I called Carl, who had to come home from work to help and then go back. I just knew I couldn't be a part of it again! So thankful for wonderful family and friends and mostly for my amazing hubby who has been so strong and supportive through all of this!

So please continue to pray for us and for sweet tucker. Thank you again for all you sweet thoughts, prayers, dinners, etc. you all have no idea how much we appreciate them:)

Love you all!