or rejoice because thorn bushes have roses.'
We have an idea how much longer we will be here now, and that makes me less anxious to get anything done faster. Everything in the medical world takes more time than I am comfortable with, but I am starting to get used to the feeling that it's not in my control. Braxton is in the best place right now...he is gaining weight finally, has oxygen and suction when he needs it, has doctors counting his calories and nutrients, nurses checking his breathing and grumbly tummy, and monitors to wake me up when I fall asleep. The acute symptoms that brought us to the hospital are being taken care of. He has a feeding tube through his nose to his stomach to prevent aspiration and make sure he gets proper nourishment. He has oxygen for his purple spells. He is on his new diet to control his seizures. All very good.
The next thing on the to do list is getting a G tube. This is a feeding tube that is right in his belly, so we will be able to syringe his ketogenic meals right into his stomach. No more hoses through his nose for him to pull out, no risk of his food going into his lungs. It is a quick surgery, and luckily uncomplicated. We had been worried he would need his stomach twisted as well to prevent his meals from coming back up, but tests showed although he relfexes, it doesn't travel high enough to be going into his lungs, so this procedure isn't necessary. Braxton will get his g tube on February 14, and will have an ICU bed for recovery. And once he is recovered we will be able to head home!
Last night I got Braxton all ready for bed and the littlest but most amazing thing happened. Getting ready is a bit of a process, first he finished his feed, got his last meds of the day, and I flushed his feeding tube with water. I changed his diaper and checked his ketones. I put in nose prongs so he would get oxygen while he slept. I adjusted his toe monitor and made sure I could see the screen from my bed. I tucked his blankets around him and turned on his dolphin to play his lullaby. I kissed him goodnight and as I pulled away to leave, he reached out and grabbed my finger. The act of reaching is hard for Braxton, and grabbing is a brand new skill. He held on to my finger tightly, like a newborn baby, but this wasn't a reflex, it was intentional. I was overflowing with pride, holding is something we have been working on developing. And of course filled with love, feeling that bond that parents have with their children that I never expected could be so strong. I want Braxton to know that I love him, even if I have to do things in hospital that must seem so mean. And in that instant of him reaching for me, it was like him expressing his love back. Braxton went right to sleep, a rare occurrence, and I just stood there with him holding on for a long time. I don't know if we would have had that precious moment had it not been for this hospital stay.