if Tucker comes off paralysis tomorrow without trouble. The doctor just left and he said it would be a HUGE step if he did and stayed off. We are going to add some more sedation medicine on board, he has found that T21 kiddos take a little more to keep them sedated. Yeah, Tucker starts moving 15 minutes after the medicine is stopped, they originally said it would take a few hours to wear off.... SO, they are going to tweak that and turn down the nitric oxide all the way on his vent tonight, plus turn up the peep on the vent (the expiatory pressure)...giving him optimum chance of coming off.
Today is day 8 post surgery.....no signs of my Tucker yet. He is making steps but little ones. I know every step in the right direction is good, I know that! Don't get me wrong....but I really want my Tucker, the one that has to put his hand at my neck to sleep, the one that says MOM, MOM, MOM....over and over again, the one that asks to watch Jack and Little Bear. I want him to tell me NO and throw his toys....and to see that smile. OH that smile!!!
It is so hard being in this place. We have made some friends here and when heartache hits them, it hits us as well. It makes you want to stay in your room and become a recluse....no emotional attachments. A mother lost her son today, they had been here 3 months...he was doing well yesterday...we woke up today and their room is empty....he passed away. The walls have many stories....many tears and many joys.
Please keep Tucker in your prayers tonight....that he will have the strength he needs to heal, that his heart will relax and accept the new repair, that his lungs will accept and not resist,,,and that Todd and I have the faith to take what comes.
The Twelve Mile Bike Ride
1 day ago