I want to write about what an awesome wedding James and I were just in or, about seeing most of our friends and family or, about Drew wanting to play on the big hill.
Not here to write about that though. I'm going to give an update about Rylee and Mito. I hate that mito is progressive. I hate that it has progressed. I especially hate that there is no cure. For a while Rylee has been on a downward slope. I wasn't to worried. I know that's how this disease works. We have been through a "crash" before. After 6 weeks she started to come out of it. This time though, she is not coming out of it. While we were in NY it became quite apparent that she is not well and she is not getting better. She has not walked in 6 weeks, barley gets off my lap and now can't even eat through the tube. Her stomach has stopped moving, she is in a lot of pain. When we could get her hooked up the food was coming back out the opening in her stomach. My baby is not well:(
Yesterday I took her to ACH to have her tube re-placed. They weighed her and she has lost more weight. Dr. W said it's time, there is nothing else we can do. Time for the TPN. My heart sank. This is the one thing that I have not wanted to do. All along I thought I didn't want to do it because of all the side effects. There are lots, and none of them are good. What hit me yesterday is that more then the side effects I don't want to do it because after this there is no alternative. This is our alternative. As long as there is no TPN there is hope. What if this does not work???? The up side is she will gain weight. One of my concerns is that when they take the TPN out she would just lose the weight again. She will lose it which is why Dr. W told me the TPN won't be coming out. TPN's are not meant for long term feeds. We have no choice but to take the side effects as they come and keep her on this for as long as we can. We are sad, we are defeated, we are in love with this precious baby girl and we will do whatever we have to. We are stronger then Mito and we will fight back.
The tube they put in yesterday is not working either. Monday Rylee will be admitted to put a central line in to start TPN.
Thank you to everyone for being there for us. We are so lucky to have a great friends and family.
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Twilight ***Updated***
15 years ago
2 comments:
Janet, you and James are the bravest, most loving parents and I am so proud of both of you. No child could be so loved by you both and by so many people as Rylee is. Drew is also so very lucky to have you both as parents. We and all your family and friends will help you fight with all we have for this beautiful, precious little girl. We love you all.
My heart goes out to you. I'm so sorry. Mito is an ugly, awful disease.
I'd like to offer some information and support.
First -- have you connected with Mito Action?
http://www.mitoaction.org/
They offer info and support on Mitochondrial Disease.
Second -- have you connected with the Oley Foundation?
http://www.oley.org
Oley offers information and support on tube and IV feeding. All free of charge.
In particular, you may want to check out:
TPN complication chart - to prevent/recognize/treat common complications
http://www.oley.org/charts/newHPN.pdf
Information on Omegaven - a new lipid being researched for children on TPN to avoid liver disease.
http://www.oley.org/Omegaven_Liver_treatment.html
There is loads of other information like swimming and traveling with TPN on the web site, too.
Also-- I'm happy to put you in touch with Oley families who have children with Mito on TPN.
Best of luck on your journey.
Roslyn Dahl
Oley Foundation Staff
(800) 776-OLEY
dahlr@mail.amc.edu
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