Wednesday, May 30, 2012


Well we went and we spoke with the team that would be doing Sky's surgery. We found out he would not be able to have any food for 24 hours, this on top of the 15 hour fast he was doing for the surgery and the day before he fasted for 8 hours for his upper GI. This was not ok with us or our doctors once it was pointed out. So we are in process if making a plan for sky one where we go in for two days the first day is to get an iv so he can have tpn (a special type of food) and the second day he will have his gtube surgery. This will is a much better plan as fasting is so hard on kids with SMA. And the surgical team is happy to have me do all of Sky's transfers, so I will be the only one moving him, I know how he moves and this should help limit the risk of any fractures. So now we wait for a day to open up and we will head back in. It's been a crazy day, ok a crazy two weeks, but we feel much better knowing we have a plan in place for the best care for our Sky bug!

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