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.
Miss Amazing
2 years ago
3 comments:
Stay STRONG! I know that this has got to be so hard for you right know..I'll keep praying for that little man that he will get the strength to recover..Does this usually happen to kidos when they have this heart problem, that thier body doesn't know how to react to a fixes heart? speaking of faith..that is what my tattoo is, it's a star with the chineese symbol "faith" we all have to have faith...especially in our situations, have faith that God will heal that little boy and get him so strong that you can't keep up with him:) I'm keeping you in my thoughts and prayers..just wisper to him..zachery and Allie said get better soon so we can play!:) stay Strong Karen..i know it's easier said than done call me if you need to
Tell Tucker we love him, tell him we are praying and we KNOW he will wake up strong, when he is ready!
The CICU is the most intense place I've ever been. I'm sorry you have to live there for so long. Tucker is a strong little boy and soon he'll be coming back to you, healthier than ever. You are in my prayers. Stay strong. Hugs to you and Todd
Michele
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