3802Re: [Myotubular_Myopathy] Update
- Dec 10, 2006Hi Abbie,Sorry to hear Kaylee is back in the hospital. Hopefully shewill be home soon. We are all praying that this will be herlast sickness for this winter and she will be healthy, happy,and back to her old self in no time.Kyle has never had a port, but Connor had one when hewas in the hospital after his cardiac arrests. It made iteasier for him. They would come in all hours of the dayand night and try to get blood. How could anyone getany sleep/rest like that. He was such a little guy at thetime and his arms were always black and bule. So wehad them put one in so they didn't have to stick him somuch. Anyway they took it out after he came home.Take careDarlene----- Original Message -----From: Abbie harrisonSent: Sunday, December 10, 2006 12:17 AMSubject: Re: [Myotubular_Myopathy] UpdateDarlene,I will definitely be praying fo ryour father. Hopefully he will recover soon and be back to his old self.On other news, Kaylee is back in the hospital with a full blown case of pneumonia this time. She is intubated and slightly sedated, but at least she is feeling better and able to relax for a few days without having to struggle to breath. Some of the doctors are still pushing for the trach, but others seem to believe in the possibility of weening her down off the vent and back to her old self. Also due to Kaylees poor veins, we have decided to have them put in a venous access port for easier IV access. Do any of the other children have this? Because I know Kaylees veins arent worth anything.We will keep you all updated and hope that everyone else is well during this season.Ryan and Abbie
Darlene <dm4462@...> wrote:Hi All,
It's been awhle since i really posted. Things have been
crazy around here. My Dad was in an auto accident and is
still in the Shock Trauma. It's been 6 weeks now. We could
really use some prayers to get him home before Christmas.
To all the new comers to the group. Welcome, I hope you find
it as comforting and supportive as we do. Without this group
we would have gone crazy with all the stuff the doctor have
told us. It's comforting knowing there is someone out there
that knows what you are going through.
To all that have been in the hospital. I hope you are all home
by now and on the road to feeling better.
Kyle and Connor have been doing great. Kyle has done very well
in school and in his therapies. Especially, Speech, he continues
to improve in voice and signing.
Hope all is well with everyone.
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