I got back to Houston on Wednesday night. Sunni has really grown a bunch. Her 3 month clothes do not fit anymore! Me and Mimi got to go shopping while I was in Amarillo and bought her a whole bunch of 6 month clothes. I thought they were going to be huge on her but they fit pretty good. Amazing.
Not a whole lot has changed since the last blog. I know you probably feel like I say that a lot but it is true. And it is really frustrating on this end. I knew this was going to be a long stay but I just imagined, hoped, and prayed that we would fit into that average 2-3 month hospital stay. Unfortunately that is just not going to happen for us. There is not a projected end date in site. It is all unknown and that sucks. I however do not want her home until I feel completely sure it is safe. Today is 100 days of life!
3 days ago (on Friday, January 11th) Sunni went to the OR to get an NJ tube placed. That is a tube that goes from the nose to the small bowel, the jejunum (NJ=Nasojejunal). She has had an NJ before from the last surgery but it came out probably by the squeezing of muscles. So on Friday she had to be sedated and intubated for the procedure They tried to do it while she was awake on two occasions but she did not cooperate (who could blame her?) and because her anatomy is so different from you and me.
Friday night they started her off on 1 cc/hour. Just so you know cc's and ml's are the same and that is barely any. Each day so far they have gone up 1 cc so today she has been on 3/hr. So far she has done good on that and no milk has backed up into her stomach. Hopefully that means that everything is going the way it should and she starts pooping regularly. She has pooped some but nothing substantial. If the NJ stays in place we will be in good shape! Miss Sunni likes to pull at it though! Eeek!
So we originally thought the next step would be to get a GJ tube in a few weeks. GJ stands for gastrostomy jejunostomy. Basically it goes through the stomach and into the small intestine. Then she will not need the NJ through her nose. The GJ is more permanent. Well---that is going to be a while. She is not big enough to get a GJ tube just yet AND they want to give her some time to heal since her last surgery was not that long ago. So we wait.
The goal is to keep increasing feeds and pray that she tolerates it and starts getting nutrition from milk and not TPN. She will start growing (she does everyday) and eventually she will be big enough for the GJ tube and we can bring her home! All of that sounds lovely but it will take an unknown amount of time and that is if everything goes according to plan. And we all know how "plans" work.
In other non-feeding news she is doing pretty well. She is so alert. She always has been. She is behind in a lot of developmental aspects but we work with her and so does OT and PT. She also gets musical therapy which she really likes. She is still throwing up several times a day. They have to clamp her G tube off to giver her meds and she barely makes it an hour before she is ready to throw it all up. Now that she has a NJ tube that runs down the back of her throat it moves when she moves and it REALLY makes her gaggy.
She has really became a daddy's girl in the last 2 weeks that he got to spend with her. I told her that we were going to have to change that after tomorrow when he leaves. She is supposed to be a momma's girl, darnit!
Praying for your family,
ReplyDeleteMisty