I have put on some before and after pictures of Trystyn's belly so I hope the after pictures aren't to gross.
Trystyn has started the process of being fed through her g-tube. They are taking it slow to get her back up to a normal feeding schedule. She has been gagging a lot which worries me because stuff should not be coming back up.
The doctor just came in and I think they are going to slow the feeds. I really just feel like she hasn't had the time to get used to getting fed through her belly. It just seems weird because she can drink a 6 ounce bottle by mouth, before the surgery in a short period of time and not have any issues, so I don't know.
This will probably mean that she will be in the hospital longer. We were pretty much still thinking that we would break out of here on Sunday, but maybe it won't be untill Monday now that they are going to slow down her feeds. I'm really not sure at this point, but I do know that I am definetly not comfortable taking her home when she is having this gagging issue. I just hate it because I know that it is hurtin her when she does it because every time she starts to kinda cry after it happens.
Other then that issue she really is doing good. She doesn't have any fever and her incisions look good. Sleeping as always is an issue, this time for both of us. She is up so much at night that I am hardly getting any sleep, so naturally my brain is not functioning at a normal level and I'm feeling kind of zombie like.
This Nurse, well I'm guessing as to her being a nurse, came in and totally went through how to take care of the feeing tube and the process in feeding her by it. I actually feel really comfortable with that part. It is so easy and man oh man getting her medicines in her will be a breeze now. Ironically enough the only medicine that she is on now is Prevacid for her acid reflux, which the doctor says that within 6 months we will be able to ween her off te Prevacid and then she will be medicine free. I am so amazed by this because all of the kids that I know, and obviously every one is different, have a number of medications that they are on. So really we are just so lucky that Trystyn is a healthy child, well not counting her severe brain damage (hee hee).
Anyway, once again it is just taking everything one day at a time and making the best if each day as they come. Everytime I come to Children's Hospital I meet so many different people with children with so many different issues. Yesterday I met a woman whose daughter had just had brain surgery to split the two halves of her brain actually in half. She is doing this hoping that this will get her daughter's seizures under controll. Even with being on numerous seizure medications she was having up to 200 seizures a day. I am hoping that this will greatly improve her daughter's quality of life.
All of this reminds me that research on Seizures needs to somehow become as important in our society as research on Breast Cancer. Now please don't get me wrong I am not saying that one is more important then the other. My three older sister's mom died of breast cancer when she was 36. I just would like the powers that be realize that Seizures are a leading cause of death in our children. Some how there needs to be away to make Seizure control the new cause that everybody wants to be a part of.
Okay, I'm done with my harping. I will keep everyone updated on Trystyn's progress. Also, I just want to say that she not worn a bib since she came into the hospital and I am feeling really good about my decision to have the Nissen Fundoplication done.
Carrie
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