update

It's been hard to post and update. I'm not sure if it's exhaustion or the lack of good news. It's my nature to always try to find some good in the bad. I think if I don't find some good something will snap. When I can't find good I go silent and withdraw. I hate that feeling. Like I said in the last post, while Kyle's surgery is a success in the sense of everything they needed to do surgically was done, it is not a success in what we so needed to be successful. The amount of bile that is still pushing into his esophagus is painful and even though it's still on suction 24 hours a day he is still struggling with pain.

So, our new plan. On Tuesday Kyle will head back to the OR to place a pacer(a temporary pacer a permanent one will not be placed unless we see it working) in his small bowel. While gastric pacing is more common we know that trying to pace Kyle's stomach will not do us any good. So the surgeon is going to place one in his small bowel. Not done very much but we are willing to try anything at this point. It is our second to last option before a transplant. The word transplant is being said with much more frequency around us and it's brutal to hear. But that's a post for another day.

For now we are enjoying the kids being here for a few days and I am holding them and loving on them every single second. It was a brutal drive for them but Mark was amazing and it's been so uplifting to have them here. Hard for them to see Kyle in pain but they are handling it so well....we have had some talks with them and they know that him and I will be here for a while. They are so strong and so brave. I'm so proud of them.

XOOX
K

Refusing to give up

The last few days have been tough for us. While Kyle is healing as expected from surgery we are having a very hard time getting anything started through the new j tube. It's been a heart wrenching process of trying and then watching him be in agony over it. Each time we start we have to stop hours later due to pain and his increase in bile and output. The NG tube that is in his nose that runs to the bottom of his esophagus that should have been out days ago is still on suction to try to keep the bile that's going up instead of down out of his lungs. We tried yesterday to cap it off and he suffered all night because of it. The surgeons and GI team aren't happy and have said we need to start looking at more aggressive options for him. The fevers and blood pressures are still an issue and that is troubling me. We all agree that Kyle's body still needs time to heal and we are going to go home and take a 4 - 5 week break. We will come back to Columbus at the beginning of January. Over the next few weeks we will have to make some difficult choices for our Kyle and the pressure of that is already weighing heavily on us. I'm so incredibly grateful that Kyle's team in Maine has been literally walking beside us through this whole trip here and are prepared to help us get him back to MMC and then home for at least some time. We both need some mental cheering up. It's been hard to watch Kyle mentally stress, sometimes I think watching that is almost as hard as watching the physical side of this. We both are spent, I'm not as strong as when this started, small things seem to crack me and I know we need to recharge.

What I can say is that we are NOT giving up on our dreams for Kyle...while others this week may be doubting Kyle's gi tract I know Kyle, he needs more time, more healing, more love and snuggles from his family in Maine.

XO
K

explanation

I didn't realize yesterday that my blog could be taken the wrong way or that anyone would take from it that I was saying not to pray for Kyle. A comment was left on Team Kyle last night that honestly was hurtful and confusing to me. I won't post it and I won't directly address it again. What I will say is this....I value and appreciate all prayers being said for Kyle...while I may have some issues with God, he for sure does not. We don't publish everything here on this blog, some things remain private for our family and our children. We have had to talk to Kyle about heaven and God....for me it's a very difficult and sad topic. No child at the age of 6 should have to have that conversation...ever. I don't care what anyone says to me, that conversation is one that should not have to be had. We've had to talk to Alex about it, I can say it's almost as painful. While I want my children to know God, I don't want them to be afraid that they will need to go to heaven now. I also know that god can be a heavy topic, I never post about it lightly. While I say all that please know that this is out blog....as long as I'm not hurting my children or my husband I will write how I feel. I have watched the sweetest child suffer for 6 years, I've watched my family almost fall apart around me, I have ached to my core. I won't ever again justify my feelings.

I thank God for my son....I thank him for the time we've had with Kyle, but I won't thank him for the pain I watch daily. I'm trying, trust me I'm jealous of the comfort people get from God...I really am. I want to get there, and I hope I can someday. But please.....I am so grateful for your thoughts, love and prayers.


XO
K

A message to the Big guy

Ahhhh, I bet a few of you clicked over thinking that maybe I was writing to the big man upstairs again, nope...not happening...him and I are still on the outs...although I may talk every single day to my Mom and MIL (because for sure if there is a heaven my mom and mil are up there) I still struggle daily with you know who...I can't begin to wrap my head around all this, nor can I make sense of any of it. So for today I'll spare you my angry thoughts about the big guy upstairs.

Kyle...Our Big Guy....

It's been a tough month for you little man, your struggling and neither your Dad or I can help you...we can hold your hand, we can kiss your sweaty head, we can whisper in your ear....but we can't take any of this away....it's a helpless feeling. When your little eyes plead with us to make it stop it's like something taring at my soul. I sit and think alot, I wonder how on earth such a tiny body can fight so hard, I wonder where you get the strength to keep doing this....you never ever give up, it's almost like each day you fight harder, more determined to beat this. We have no idea if the surgery worked or not, right now you've got the surgeons scratching their heads and feeling frustrated....but your Dad and I know you, it takes time and we haven't given up on a better quality of life for you. You deserve us to keep fighting and we will....whatever it takes Big...

I could not be any prouder to be your Mommy

Recovery

From Kate:

"Our Kyle has once again shown us how things will go...he's off the vent and breathing on his own....clearly still on oxygen, but he's resting comfortably right now. This is step one"

He was even a little ticked off about missing Bingo in the playroom last night :)

Living Life for Today ♥

Carissa

Out of Surgery

Kyle is out of surgery. Heading straight to ICU. He is stable but on a lot of support. Surgeon had to do extensive repairs. Will update with more details tomorrow. Pray for a peaceful night of rest for Kyle, Kate and Mark. They appreciate everyone's love and support today and always.

Carissa

Update

Kyle has been in surgery for about 3 hours now. Kate just heard from the OR and Kyle is doing ok and the surgeons are working away - that is all. Keep praying...
Carissa

Surgery Day

This is Carissa with a quick update on behalf of Kate and Mark. Today, after a 3+ week wait in Columbus, Kyle will be finally undergoing his surgery. It is scheduled for 2 pm and will be a long and complicated surgery. I will try to do a few updates here as I get them since I know a lot of you are not on facebook for the updates. If you are on facebook, you can follow along with Kyle's journey on the Team Kyle page. There has also been a fund set up for the family to help with everyday expenses that are building up - if you'd like visit the I *heart* KyleStClair page to learn more!
Thank you for loving Kyle and the whole family! Keep the prayers and good thoughts coming, they mean the world to the family!

Carissa