I'm sitting next to Kyle who is for the moment sleeping so I'm trying to muster up the energy and the brain power to write an update.
The last few days have been beyond terrible, Kyle has been in horrible pain and his lungs have been really bad. Yesterday he was taken downstairs and they did some testing on his belly and a contrast study to make sure his new anatomy was still all hooked up correctly. The good news is that it is and that they saw no blockages.
The really bad news is that they put contrast into his belly and watched it empty out his belly, go down into his bowels and then go back up the other side all the way up his esophagus. Which was supposed to be impossible. This does explain the vomiting, the lungs and what we knew was reflux. They inserted a tube down into his esophagus that is now light suctioning all the bile out so that he 's not choking on it and aspirating it anymore. Since they did that he has been in alot less pain...which is wonderful but it leaves us with a very big problem. How do you fix that? We don't know....the options are not good and without getting into my heartache to much right now Mark and I are sick over this.
So for now we wait and we try to keep him comfortable and healing....his mental state is still not good but we are seeing little bits of our Kyle coming back to us. He will stay in the ICU until we can figure some more things out.
Please continue to keep Kyle in your thoughts and prayers....he is not out of the woods yet...
XO
K
seventeen. . .
10 years ago
16 comments:
Kate,
We continue to hold your family gently in our hearts.
Thank you so much for your updates. I can't even imagine how difficult it is to write down.
xoxoxoxoxo and then some,
Lauren
Kate, my first reaction is: really? How is that possible?? I had so hoped that disconnecting his esophagus from his tummy would give him some relief!!
I don't even know how you can process this information, I really hope the docs figure out something soon and your sweet boy's spirits can be lifted,
Leigh
(((Kate)))WHAT?!!! I cant imagine what youre all going through right now. That poor boy, he's been through so much and so much pain, heartbreaking...continueing to pray for him, pray for his Drs. in hopes they find a solution soon.
HUGS, HUGS, HUGS--
Heidi & Jack.
My heart breaks for Kyle and for you! I am continuing to pray and I hope the Drs. find a solution that isn't painful for Kyle!
Kate..
I do not know you personally, but heard about Kyle's situation and have been following your blog. My heart aches for you and even more for your precious son who has to endure all of this pain. Please know that you are in my thoughts and prayers and that your strength is admirable. Take care and God bless you all as you continue through this journey..
Please know that many people are praying for Kyle, for your family and for Kyle's doctors. God bless you!
~Michelle Lewis
I don't even know what to say, no wonder he's been having such a rough time :( Sending huge hugs your way and hoping that tomorrow is a better day.
S
Kate I am holding you close to my heart & in our prayers. I am at a loss for words but have no doubt that We are all praying & Kyle is going to bebbetter there got to be a way.
I pray for the doctors to soon find a way for Kyle to be better. Adrian just said a prayer for KYLE, he said if Kyle got bubby can I give him a bandaid..I cried.
We love you please know we are here anytime.
xoxoxoxo
Patty
Kyle-you & your family are in my prayers-sending a big hug: Mrs.Valerie
Oh, Kate!!! Our hearts ache for all of you! We just want to hug and kiss Kyle; cannot imagine how you continue through this. Your strength, endurance, love - know how proud Kyle is of you.
We are here. Anything. Anytime.
Loving all of you,
Pam & Doug
i'm a stranger, found your blog through lindsey colemans. just wanted to know my heart is aching for you. it must be so heart-wrenching. we'll keep your little guy in our prayers.
ashley
Kate,
My heart is absoloutely breaking for Kyle and for you, I know how much hope there was that this surgery would help him get off of the TPN and lead a more normal life. I hope that the doctors are able to find a solution that will keep him from refluxing and allow him to get him back to where he was, if not better. Keeping Kyle in my thoughts and prayers every day.
Stacy
I cannot imagine how deeply your heart aches. I am praying for your boy and for you.
Just checkinh in on you & praying for a better day for all of you. Keeping you close at heart as always. We love you.
xoxooxoxox
Patty
Dear Kyle and your family.
I hold you gently in my thoughts and prayers. I want you to know that you have touched my heart. I think of you every day.
Stay strong,
Love,
Carmen
(Lauren's mom)
Dear Kate,
My thoughts and prayers are with all of you. You do such an amazing job with your blog...and I struggle to find a few simple words to bring comfort. If only... I continue to pray for a miracle so that Kyle will soon be home with 'his kids' again.
Love,
Vicky
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