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. ;)
XOXO
Kate
8 comments:
I don't know how one blog post could make me feel so many emotions in just a few paragraphs. I am constantly amazed by you all and by the fact that I could so deeply care about a little boy that I've never seen in person.
Much love to you (and Dr. Trent)!
Julie
So glad to hear there are some answers...and hoping that things work out well for Kyle. Sounds like you have a great team in Columbus & that there is much hope!
Safe flight home!!
Kate,
Thanks so much for all your updates, you've been on our minds ALOT.I know there is so much information to absorb, but as always you make every day the most comfortable you can for Kyle while always seeking the best for him. You are incredible parents! I know you must be thrilled to come home today and see your other angels, and won't they be happy to see all of YOU! Have a safe journey...
Elaine
I'm so glad you guys have some answers...even with some of those being hard ones. You've all been through so much - and are such a strong family. You can weather any storm.
Much love -
Denise
Kate-
Seriously, could he get any cuter?! I'm so thankful you have some answers and such an amazing team- including Capt Tom!
xoxoxo,
Lauren
Hi guys "Captain Tom" here - Just wanted to say what a pleasure it was to fly you all home. All the years I have been doing Angel Flights, I must say this one has impacted me the most. I have yet to come across a more gracious and frankly incredible set of passengers. As a father of 2 boys I must say stories like these tend to hit me pretty hard. The strength and love you have for your children are truly inspirational. Kyle is such a cool cute little boy. It was a pleasure flying him. When he gets a little bigger we'll let him fly us around. I wish you all the best of luck and if I can help again please let me know.
Take Care
Tom
Kate,
Your family has been in my thoughts and prayers all week. You all continue to amaze me,
Leigh
Captain Tom, thank you so much for taking care of this awesome family.. we can never thank you enough !!!
Nurse Merydeth's Mom
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