So today was Janessa's monthly ICARE visit, usually these visits are full of doctors, nurses, therapists, and social workers coming in and discussing issues about Janessa, and regulating TPN. Well today, the TPN numbers weren't even touched, and Janessa has gained weight from the last monthly check up, and continues to do so at a decent pace, which is good, and the doctors are happy about it.
Well the point being the doctors are amazed that with her condition being of MMIHS that is he able to tolerate her feeds so well, and that we KEEP increasing them every month. Right now Janessa is at a 3 ounce drink every 3 hours with snacks in between, which is incredible considering at birth she was only eating 2ccs of formula every four hours. With this being mentioned her doctor today told us that she might have been misdiagnosed with another motility disorder, but we would have to wait and see how much she will be able to tolerate in the future. It was mentioned if she gains more weight next month they will drop her TPN to 18 hours a day(which would be wonderful) and continue to do so depending on how much she tolerates, and her weight gain in comparison with it. He mentioned that she may actually be able to come off of TPN and not need a small bowel transplant.
With this fact, Janessa also will be dropped on the transplant list since her liver function is so well, she has tons of access space, she has been infection free, and she is tolerating feeds well. :) I can't even say how lucky I am to have such a happy, and intelligent baby.
Thursday, July 28, 2011
Friday, July 1, 2011
July 1st 2011: The First Call
I can't even describe how I feel at the moment, and I am so unaware about my opinion on the matter. This morning we received a call from children's hospital about transplantation for Janessa. At that moment I was terrified I didn't know how to feel, was I ready yet to make such a decision for my Janessa, what the outcome could be of transplant(it's been bothering me for awhile actually), and was Janessa well enough this morning.
Without much time to think, I knew I had to tell them that Janessa has an upper respiratory infection at the moment which I did, and was told it would be very high risk to put her through that, especially since her immune system is pretty down at the moment from trying to kill this virus. I cried after that, it made me realize how much of a chance she could have being a normal kid, and the only time she has ever been sick since she was born was at a time when they called for her transplant, but then again I felt relieved. I felt relieved because I just don't know how well Janessa will do with transplant, it's a whole different lifestyle, and Janessa just does so well on her TPN, and current lifestyle. I am afraid, and I feel selfish that she has this opportunity, but I don't want her to have it. I think it's been about the recent death's of a lot of people who were transplanted, but a lot of the kids I are doing well with their transplants. I just don't know how to feel about it all.
In reality right now I feel like I have too much on my plate with these decisions, and hope I can settle on an opinion. I do though want to thank our could have been donor family for giving Janessa the opportunity at a normal life, and pray you'll remain at peace today with the loss of your child. Thank you.
Without much time to think, I knew I had to tell them that Janessa has an upper respiratory infection at the moment which I did, and was told it would be very high risk to put her through that, especially since her immune system is pretty down at the moment from trying to kill this virus. I cried after that, it made me realize how much of a chance she could have being a normal kid, and the only time she has ever been sick since she was born was at a time when they called for her transplant, but then again I felt relieved. I felt relieved because I just don't know how well Janessa will do with transplant, it's a whole different lifestyle, and Janessa just does so well on her TPN, and current lifestyle. I am afraid, and I feel selfish that she has this opportunity, but I don't want her to have it. I think it's been about the recent death's of a lot of people who were transplanted, but a lot of the kids I are doing well with their transplants. I just don't know how to feel about it all.
In reality right now I feel like I have too much on my plate with these decisions, and hope I can settle on an opinion. I do though want to thank our could have been donor family for giving Janessa the opportunity at a normal life, and pray you'll remain at peace today with the loss of your child. Thank you.
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