Monday, 09 March 2009
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Cincinnati again.......
We are in Cincinnati hopefully until tomorrow morning. Molly had her stent (plug to hold the airway open for healing purposes) removed today. We came last night and had to be here at the hospital at 6:45a.m. Molly did really well with the pre-op stuff. She was in a different o.r. today so only one of us could go back to help her go to sleep. Joe held her. She was o.k. until they started coming at her with the circuit. Then she freaked and the nurses had to hold her down. She is a fighter and there is nothing any of us can do about it. That is what got her to this point. I can't imagine being a kid and basically having absolutely no control over what goes on with you. I absolutely hate holding her down. I feel like this awful person and there is nothing I can do about it. I don't want someone else to hold her down....then I think I would feel worse. I have held her down more in her little life than I have been on vacation in my whole lifetime! I know it is to better her quality of life. That is crazy and getting a lot harder to do as she gets older. She has figured out that she can use her feet too. When she kicks that really hurts your shins. She also has learned that headbutting is also effective. O.k back to the surgery! =) They were finished with her procedure in about 20 min. All looked good. They removed the stent and took pictures. It looks great right now, but may not look as well next week. They said that the body does some weird things. No crazy granulation tissue at the moment, so we are good on that front. We will be back yet again next Monday for a bronchoscopy (a camera view from within). If she does have any granulation tissue they "pluck" it out. Sounds fun huh! =)
The only concern they had was a bit of tissue just above the stoma. They looked at it last week but weren't sure if it would be a problem. Last week they put one graft in from her voice box to the stoma(where the trach enters the airway). That was all one bit of cartlidge. They would have had to take another piece from another rib to extend it to this new area of concern. Their main concern was that when you put two grafts together they don't always heal as well. They will monitor this part of her airway. If it continues to collapse when she breaths, they will have to redo this area as well. They won't do that until the first area has healed and they have a new baseline to go from. Once she has healed, we do another bronch and determine if she really needs the reconstruction in the new area. Yes, we would have to go through all of this again......do you think she will trust us anymore once we are finished cutting into her? I know this is all to make her breath on her own, but I am tired of seeing that look in her eyes..."again mom....come on....aren't we finished yet?" The possible next reconstruction will be almost as big as the last....this will be a smaller piece of cartlidge....this time it will be a stage one. That means she will be intubated for a short period of time and trach will be removed and the stoma stitched shut at the time of the surgery. I am not sure, but I think it will be a longer stay in the hospital....like we anticipated last week. I hate this for her!
I do look forward to hearing her voice. They are going to try a voice valve.....not so that she can try to talk but so that the medicine will bounce around in her airway. Sounds pretty doesn't it! =) If she does talk as a result that would be great! =) She has never talked but she watches our mouths as we talk so we figure she will pick it up really quickly! =)
One of us will try to update tonight when we go back to the hotel. One of us will stay with Molly tonight. I hope all of this helps. Thank you for your prayers.......we are still walking this journey .....one step at a time. Keep praying!
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