Thursday, November 18, 2010

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

7 comments:

Mel said...

We miss you all so much and can't wait for you to come home! Your strength and kyle's strength are truly inspirational! We love you! Mel & family! Xoxo

Cheryl Harmon said...

A little loving from his brother and sister will perk him up and get him feeling better! Thinking of you and wishing you the best.

ANewKindOfPerfect said...

I hope that when Kyle gets home to his whole family he will heal and gather his strength. I am sorry he is still doing poorly.

Shari said...

I hope he can get some relief. Poor babe! He is in my thoughts and prayers and I am so sorry it is so tough for him and you!

Heidi said...

Sorry he's still struggling so, praying the familiar surroundings will help him heal quicker. AND get the recharging you need too! HUGS and prayers always-
Heidi % Jack.

MJ said...

I hope that a trip home will be good for Kyle and you.
I pray for you every day.

Rebecca said...

My dear sister...you and Bigs both make me so very proud. Can't wait to have you both home soon. Do not ever doubt your strength...you are the strongest woman/mommy that I know. You are an inspiration to me each and every day. Love, love, love you...Boo