Well it is Sunday morning and we have been here since Thursday Morning. Trystyn is just not tolerating it well when we increase the volume of her feeds. The doctor came in and said that she looks good and sometimes it just takes longer for some kids to get used to getting fed through their belly. She will stay at getting 3 ounces over a 2 hour period all day today. Last night they tried to increase her to 4 ounces over a 2 hour period and she started gagging really bad again. They had to stop the feed and now we are back down to the 3 ounces. The doctor felt that there wasn't anything wrong as far as the surgery is concerned, but that it is just taking her longer to figure it out.
So far I am planning on being here until Monday at least, but the Doctor didn't say when he thought they would release her to go home. Trystyn has a Neurology appointment on Tuesday at 1:00 pm. I guess if she is still in the hospital I am going to just go down to the 2nd floor where her Neurologist is at and go to the appointment by myself and say that if she wants to see her she can just go up to the 10th Floor. Really I know that sounds silly but I made the appointment at the beginning of the month and I really don't want to have to reschedule it. I just made the appointment to talk to her about her sleeping issues. The Melatonin that she put her on a couple of months back allows Trystyn to fall asleep, but it doesn't keep her asleep. I am hoping that there is some kind of pill that she can give that isn't too harsh that will allow her to get a full nights sleep. Because not only does Trystyn need it, but so do I.
I am sick of being in the hospital. This place is the best place to be with your child, but ugh it gets so lonely with no one to talk to. My husband brought up the laptop so at least I have something to play around on. Plus, I feel like I could sleep for a week straight. At least the food is decent here. I miss Rain and I hate that I have to find other people to keep him since my husband works 2nd shift. Plus, I know that Rain doesn't like that Trystyn and I are not around. I told Rain all about Trystyn's surgery and yesterday when Mark and Rain came to see her he immediately asked about her feeding tube and that he wanted to see it. I had told him that it was called a Mic-Key Button and he told me that he wanted to know where her button was at so he could push it. I swear I was cracking up. I always forget how literal kids are at that age. So then I had to explain that he couldn't push the button that it was actually a button that you were supposed to push. After I lifted up her shirt so he could see the feeding tube he looked at me and said "Who did this to her?" I told him the doctors did and he leaned over to kiss her belly. It was the cutest thing.
Mark and Rain are on their way right now so I will post more later.
Carrie
Comments