Kyle's testing tomorrow will basically tell us in a nut shell what parts of his stomach, bowel and colan are working...or not working. We already know that his stomach is not working the way it should what we don't know is if this has progressed into his bowels or not.
We also meet with the surgical team...can I say that I don't like their options, of course their options only work if his motility is still in decent shape...if it's not, we have some very serious and troubling issues on our hands. We have been asked about transplanting Kyle's small bowel...at this point we are not there..tomorrow's testing will tell us alot. Transplanting at this point is not an option for him since we don't know if this is a progressive disease that is affecting his lungs and bowels. At this point we think that's not the case but again tomorrow will tell us more.
It will be a horribly long day for him...for all of us...which is hard since I think we all are already exhausted. Kyle did great most of the day but is clearly stressed tonight...which is painful to watch. He has lots of questions which we can't answer right now. His lungs are stressed and I don't like that at all...he's on high doses of steroids to help with the sedation tomorrow...my guess is that's not helping his overall mental health. He keeps telling everyone that he's in Columbus to fix his belly...he wants to eat he says.
I feel very tired tonight, I am homesick. Sounds strange to say that as an adult. I want to scoop him up and make this all better, put a band aid on, take the PICC line out, remove the feeding tube, heal his lungs and take him home. I wish there was a way to express how amazing this sweet Kyle of ours is...he has so much faith in all of this....I want that, I want to feel what he does...
I am petrified of tomorrow, of what they may tell us...
You all have come through for us so many times...please say Kyle's name out loud tomorrow...even if it's just a whisper. Please.
XO
Kate
seventeen. . .
10 years ago
14 comments:
Hi there, I am a friend of a friend, of a friend.. who you will prob never meet, but please know I think about Kyle every day since I heard about you all looking for a flight. I'm all about you guys succeeding and am shoving all my hope your way too... please hang in there and know so many people are pulling for you guys. GOOOOO KYLE!
I so love that boy. I love him for his faith. I want that faith too. I pray for that answers are coming soon for y'all. I want so much for the doctors to make his all better...make it all heal. I pray...
I love you
J
KYLE LOOKS SO ADORABLE ! You and Mark are oso stong you will get through this. you are two fo the strongest most determine dpeopel I have evcer met. we all love you and have Kyle's faith that he will get better.
love Merydeth's MOM
Thinking of you all, Kate. I hope tomorrow brings the news that will help Kyle move forward...one step at a time to heal, to be healthy, and finally get some peace. That sweet boy has been through so much! I'd love to see pics of him some day soon running around with no tubes, no worries....just that great smile. :)
xoxo
Heather
I will say it over and over all day tomorrow :)
hugs to you.
Stacey
My husband says you can tell so much about someone just by looking into their eyes... they could never say a word to you but you can see so much about their life just by their eyes.... Kyle's eyes are full of hope that he will someday live a normal child's life... and also the faith he has in his parents and the doctors and nurses that help to get him there. I hope that by this time next year Kyle is playing freely with his brother and sister... eating all the things a 6 year old should be eating... and seeing a Doctor is just for a well child visit.... I don't know of any child who deserves this miracle more... Hugs to the Big man... xoxo
Love and Hugs
Kyle will be in my thoughts and on my lips tomorrow.
xoxoxo,
Lauren
I am praying Kate. I know you are scared! I have asked some friends to pray. I feel like those words are so moot. Know our family cares and we are pulling for you.
I am so sorry Kyle is feeling the stress today, I hope that this visit gets you all the answers on how to move forward and get him healthier. I will definitely be saying and thinking Kyles name tomorrow as all of his tests begin. Hoping for the best for you all!
Stacy
xoxoxo - that's about all the words I've got right now.
Love you...
We found you quite by accident and have fallen in love with your family! We will be saying prayers out loud for all of you that God will grant the doctors the wisdom they need and that He will grant you and your husband the patience and peace that you need - Lots of love from our family to yours.
We found you quite by accident and have fallen in love with your family! We will be saying prayers out loud for all of you that God will grant the doctors the wisdom they need and that He will grant you and your husband the patience and peace that you need - Lots of love from our family to yours.
We found you quite by accident and have fallen in love with your family! We will be saying prayers out loud for all of you that God will grant the doctors the wisdom they need and that He will grant you and your husband the patience and peace that you need - Lots of love from our family to yours.
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