It's been an overwhelming week. I have to start by saying we are thrilled with the teams at Nationwide...knowledgeable, kind, warm and compassionate. As I said yesterday Kyle's motility in his stomach, bowels and colon is not very good. There is though some movement...which is HUGE for us right now...the chances of it coming back or getting better are not good. The fact that it has gotten worse over time is also troubling...but we can't predict the future, all we can do is live for today...get a plan for today...and make sure Kyle has everything we can possibly provide for him to keep him comfortable and happy. At this point our only hope to get him off of TPN is to place the separate j tube (roux-n-y) and hope we can get feeds started. We won't know about the colon until we start pushing feeds...
As for the esophagus we did see reflux on the study which for Kyle is never good...I knew we would see it. We've seen a change in his lung status so I had a feeling there was some reflux going on. The surgical team said that the surgery on his esophagus needs to happen...when we are not sure. They wanted to do it all at the same time in Columbus but they wanted to study all of Kyle's films from Maine before we come up with a plan.
None of this is easy for us to swallow..our emotions have been all over the place. The thought of any more surgery on this sweet boy is almost to much to bare...
We were a little nervous about getting home due to weather but our amazing Angel Flight Pilot...Pilot Tom...is leaving work early to come get us...TODAY!
We have alot to absorb and some decisions to make...we will keep you all updated. We got some amazing cards, gifts, flowers and love while we were in the hospital. We are so grateful for you all. Thank you. I only have a few pictures to post, Kyle was not feeling well for the last few days but I wanted to show you a picture of a gift from a new friend of ours. Dr. Trent...who we have meet thru my good friend Julie..brought Kyle a new jersey from the hockey team here The Blue Jackets, he's been wearing it ALOT. ;)