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So it has been a very rough week on me, Derek and Christina. Lets start by saying the phenol and eye stuff went very well in the OR and took less time than thought.
It is positive that there is nerve damage in the eyes and that has nothing to do with the PVL. The nerves were not fully developed and there is no way to know how she sees. This is nothing new to us but very hard to hear. So her vision issues are not fixable in any way and there is more than just one problem. The issues are as follows: The brain does not process what the eyes are seeing, the nerves in the eye (both of them) are damaged due to under development, and then the nerves are smaller that they are suppose to be. That about sums up the vision issues.
So now to the phenol and botox. Both of those procedures went well. It will take about 4 weeks for the botox to get it's maximum benefit. The phenol on the other hand was instant. I have mixed feeling about that and I think as does Christina and Derek. The muscles were loosened in the inner thigh and that is a positive. However on the other hand it seems that it has increased her tone elsewhere and that she is unable to control her body as well as she was. It was brought up to our attention that she would have to relearn stuff because her body is different now. It is not a bad thing she is now able to use muscles that she was unable to control before.
They let Derek and I go into the OR to put her to sleep. I held her down and that was horrible to hold her down while they masked her. She woke up and was a Daddy's girl for two days. I guess that I can't blame her I'd be mad at me too.
It is hard on all of us. It seems that things that has taken us 2 years to accomplish are now unaccomplished, but I am positive that she will bounce back quickly and learn new skills in the process. It is just hard and frustrating on all of us.
On a different note...
Bonie - Christina's first primary NICU nurse was in the OR and that was her nurse for this round and it was wonderful to see her again.
By the way HAPPY BIRTHDAY BONIE !!!!!! It made Derek and I feel much better knowing that she woke up in good hands.
We also got to see Becky while we were there and Dr. Perdue ( Christina's very first doc in the NICU )
The car rides were not the greatest either but not as bad as usual.
We did have fun at the hotel aside from the hospital stay. Christina and daddy went swimming, I did too. We also took a sheet and did sheet rides up and down the hallways in the Sheraton.
Also when we got home Derek got Christina down for a nap in her bed. That is the first time ever. Good job Daddy.
So now we are just trying to get back to a normal routine and lots of therapy to get back to where we were and then some. Christina is truly an amazing child. She does wonderful with all of the procedures that she has to go though and comes out in with smiles.
Bonnie
Dr. Perdue
Becky
It is positive that there is nerve damage in the eyes and that has nothing to do with the PVL. The nerves were not fully developed and there is no way to know how she sees. This is nothing new to us but very hard to hear. So her vision issues are not fixable in any way and there is more than just one problem. The issues are as follows: The brain does not process what the eyes are seeing, the nerves in the eye (both of them) are damaged due to under development, and then the nerves are smaller that they are suppose to be. That about sums up the vision issues.
So now to the phenol and botox. Both of those procedures went well. It will take about 4 weeks for the botox to get it's maximum benefit. The phenol on the other hand was instant. I have mixed feeling about that and I think as does Christina and Derek. The muscles were loosened in the inner thigh and that is a positive. However on the other hand it seems that it has increased her tone elsewhere and that she is unable to control her body as well as she was. It was brought up to our attention that she would have to relearn stuff because her body is different now. It is not a bad thing she is now able to use muscles that she was unable to control before.
They let Derek and I go into the OR to put her to sleep. I held her down and that was horrible to hold her down while they masked her. She woke up and was a Daddy's girl for two days. I guess that I can't blame her I'd be mad at me too.
It is hard on all of us. It seems that things that has taken us 2 years to accomplish are now unaccomplished, but I am positive that she will bounce back quickly and learn new skills in the process. It is just hard and frustrating on all of us.
On a different note...
Bonie - Christina's first primary NICU nurse was in the OR and that was her nurse for this round and it was wonderful to see her again.
By the way HAPPY BIRTHDAY BONIE !!!!!! It made Derek and I feel much better knowing that she woke up in good hands.
We also got to see Becky while we were there and Dr. Perdue ( Christina's very first doc in the NICU )
The car rides were not the greatest either but not as bad as usual.
We did have fun at the hotel aside from the hospital stay. Christina and daddy went swimming, I did too. We also took a sheet and did sheet rides up and down the hallways in the Sheraton.
Also when we got home Derek got Christina down for a nap in her bed. That is the first time ever. Good job Daddy.
So now we are just trying to get back to a normal routine and lots of therapy to get back to where we were and then some. Christina is truly an amazing child. She does wonderful with all of the procedures that she has to go though and comes out in with smiles.
Bonnie
Dr. Perdue
Becky
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