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