Thursday, October 23, 2008
A New Line!
Unfortunately Marissa's line was dislodged Tuesday morning. We don't know how and at first we weren't even sure if that's actually what had happened. There was some bleeding and drainage around the site and it looked pulled out slightly, not more than 1/8inch. After further testing it was confirmed that it was indeed dislodged. We have a new nurse and while I do so appreciate her and all the wonderful help she gives me...I'm a control freak and knowing she discovered this and not me and not knowing if she knows more than she let on...well it makes me sorta panic a little ok ok a lot. She's home now. Surgery went well. I thought Id have more to say...but I guess I need to process a bit more before I do.
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2 comments:
I am SO sorry to hear about the new line!! My 2 yo ds is TPN dependent due to mitochondrial disease. One of our blog readers sent me the link to your blog so I could see the vest your mom made - WOW!! I could definitely make this and will do some for Noah ASAP.
I was looking at your post where you have the photos of your daughter's various pumps. I wanted to mention that we use the same brand of pump for Noah's TPN, but we are able to do his TPN and lipids in the same bag. Makes life easier!! The bag comes divided with lipids at the top, and when we are ready to serve :-) we remove the divider to mix the lipids in. Our home infusion company is Coram, and they are in all 50 states. They do the mixed bags all the time.
Don't know if this would help. Their number is 800-274-5076.
Blessings,
Kate
Hi! You don't know my but, I've followed your other blog for awhile and jumped here when I saw your update notice. Marissa is beautiful :) .
I noticed the guards you were showing off a few posts back. If you go to this blog:
http://homeschoolblogger.com/ourquiverfull
you can find a pattern for almost the exact same thing. The blog author is a Mom of a little boy who is competely TPN dependant. He has a mitochondrial disease. She just posted the pattern and instructions because she wanted to make hers available for parents who need them, she doesn't want to sell them because she knows most kids who need them have parents who don't have any extra $$ after medical stuff etc. All she asks is no one uses them for profit. I hope this helps and someone can make one for you :)
Violet
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