Thursday, March 3, 2011

How are you, how is Kyle?

It's the question I swear that makes me cringe the most....you see, I want Kyle better with every single part of my body, but so do so many people. When people ask how Kyle is you can actually see the hope in their eyes or even the hope in their text messages, emails, IM's....they want Kyle to be better almost as much as we do. Most think since we are home that all must be well...oh I wish that was the case. Things have been tough, we are completely unable to start anything thru Kyle's tubes and now it seems he is losing motility in his esophagus. He is unable to handle his own secretions and we have had to start another IV med to try to help with that. His energy level is low and his overall condition is still troubling us. We had thought he'd be back at school by now at least at half days. His team is talking to us about going to Pittsburgh to talk to their transplant team, what is troubling is the amount of organs that Kyle would need transplanted. The odds are not even close in his favor. We still have the option of going back to Columbus to place the pacer but we've been told the chances of that working are poor. Sadly we need to make a plan soon...the pressure to make that is overwhelming us. I keep hoping for peace in my heart, that I will wake up one morning and just know what to do....

Please keep asking how Kyle is, ask how we are....but know depending on the day you may get a very truthful answer. <3

Love
K

12 comments:

Anonymous said...

So sorry to hear that things haven't been good for Kyle..he is such an amazing boy..and has a family that loves him so much. I pray that you will see a sign soon that things will be starting to turn around..just remember you have so many people that are praying for Kyle and the rest of your family.

Reagan Leigh said...

I too often wonder how Kyle is doing. I keep coming back to the blog to see if there's a post that just never made it to my google reader. I hate it that you all are going through so much. It's just so hard trying to make decisions like that, you just pray that one doctor would stand up and say THIS is what you need to do! I just wanted you to know that you continue to be in my thoughts and I will definitely keep you in my prayers.

Amy said...

Know that Kyle is in my thoughts each and every single day...sending you love, hope and strength xoxoxoxo

Rachel said...

Sending love, strength, prayers, hope, courage, and peace. May God bless you all!

xoxo

Pilot Tom said...

Kate my thoughts are with you and my favorite little passenger. Sorry its not going any better. If and when you decide you need to go to Pittsburgh, Columbus, or frankly wherever I will be at Northeast Air with warm blankets ready to go when Kyle says "floor it".

And PS to whoever your jerk off critic was you have got it completely wrong. Kate you are first class all the way and deserve nothing but praise for the love and dedication you and Mark have given to your boy.

Best wishes Pilot Tom

Jessica said...

I was so happy to see "three little saints" pop to thetop of my blog roll. The happy feeling faded fast as I read your update. I am praying for your beautiful Kyle, with hopes that you will find the right answer for him. Motherhood is hard stuff and with our sick kiddos it is amplified. As much joy they bring us, they bring worry as we want only the BEST for them... You are so strong and you are doing just that, finding the best for your boy. Keep fighting!

Lauren said...

Kate-

We continue to send our love and hugs to you every single day. In fact, today I was wearing my Kyle shirt and got asked what it was all about. I gushed about this amazing boy and family that I am humbled to call friends.

Wishing you both moments of peace-
Lauren

snapdragon said...

I pray that things take a turn for the better and the doctors have clarity for what needs to be done. I pray your boy is in peace and happy.
Prayers from Tx

Anonymous said...

I'm wearing my Kyle shirt today and have told his story so many times today. I've never met your family but know of you through you of a mutual friend. I think of you every day and pray for some relief for Kyle.

MJ said...

I will keep you all in my prayers.

Heidi said...

Sorry Kyle continues to struggle. I can only imagine what youre all going through, with no real plan on how to improve things. Kyle and your family is always in my prayers as is his team of Drs. HUGS--
Heidi & Jack.

mamabear4322 said...

i will be prayin i often think of yall i cant begin to understand the pain hes going through or how mentally exausting it is he knows you love him hell be there with that sweet face saying ill be ok...ill keep lookin for blogs and keep him in my thought and prayers
god is with your family he has a plan we may not know what that is but well wait and see:)
god bless
mommy to kyle daddy brother and sister and kyle your so brave :)