So as Mackie said, Gracie did beautifully in surgery. Hurler children tend to have airway issues which can make anesthesia more complicated. Our Gracie is ahead of the game and with no airway issues, everything went off without a hitch. So Gracie now has a new set of ear tubes and a central line to deliver her treatments and also her new stem cells when that time comes. Yay for no more needles in my Peanut!
Of course with having the central line comes lots and lots of maintenance. And true to Gracie form, I can accurately call it "high maintenence". :) Lots of flushing the lines, changing dressings, changing tube endings, hiding the lines from Gracie, keeping the area clean as a whistle, etc. etc. etc. Of course, we'll go to any lengths for our Girl, so this will soon become a routine walk-in-the-park as well.
We had a quick chat with our BMT Nurse, Teresa. She is heading off to an MPS conference tomorrow, so she wanted to check with us on any last questions we have for her. It seems that they will be trying to get Gracie back for transplant within 10 weeks... actually, it will probably be 9 and Gracie will have her 10th infusion during her work-up. So hopefully it will not be as long until transplant as we originally expected.
So thats a general summary of today's events. More info to come later.
One quick note before I crash...
The sleep study was a total bust. Gracie screamed most of the night because of the stuff stuck all over her body, and Mommy barely slept at all because Gracie would only sleep if Mommy held her. What a nightmare. Even Uncle Mack in his dead-to-the-world sleep heard the Peanut protesting the sleep study. I can only hope that we did not have neighbors on the other side of our room. :(
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5 comments:
Glad that it went well and Gracie is doing well afterwards. Sorry to hear she protested the sleep study, I think I would too with all the things going on.
thrilled to hear everything went so well today - Gracie is something else!
Gracie's a fighter - that's for sure. God bless her - sounds like she's taking all this like a champ.
poor pookie. I know they don't sleep with all those things stuck to them. I remember it clearly. I know its overwhelming but I love to see things moving so quickly for her!
Poor little peanut. I don't know how they would successfully test any infants in a sleep study with all that crap attached to them. Glad everything else went OK though.
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