Been a few days since we've been able to post an update. Since the last update, they have moved us from our bigger room at the end of the hall to the smaller room on the other side of the unit since Rachel doesn't have as much equipment hooked up to her. Currently, the only thing hooked up to her is her PICC-line to administer her meds and to draw blood and her monitor.
She has gotten up out of bed the last two days and has walked from her bed to the door about six or seven steps. She has also been sitting-up a little more too. Yesterday, she actually wanted to color and paint a ceiling tile that will eventually be placed in the Pediatric ER. She seems, overall, to be feeling better each day and she looks GREAT!
Two areas of concern over the last two days has been the results of the swallow study and the need to ramp-up the drugs to suppress her immune system even more. Yesterday, ENT did a test that showed her left vocal cord was not moving at all, which is not at all, surprising. Considering that the breathing tube was in for over two months it was bound to cause her problems. The docs believe that with some rest and exercises, it should improve. We experienced the same problem after her last surgery five years ago. So, they aren't allowing her to eat/drink until her vocal cords improve. Believe it or not, she actually wants to eat!! I asked her what she wanted to eat, she said she wants "Cocoa Puffs" for breakfast and a baked potato with butter and salt for dinner!
Yesterday, we found out that the latest test showed did show some antibodies B were showing up in her latest blood work so they have to start her on some heavy duty steroids to beat back the antibodies. Since the new heart is a foreign substance in her body, antibodies would normally try and fight the new heart so that is why they have to totally suppress her immune system to keep this from happening.
And, finally, thanks to Jennifer D, for the awesome hospital gown. Rachel has also said that she feels like she is in jail here so Jennifer made her an orange gown with a patch that reads: "R. Smith Property of Shands Prison 042811." (042811 is the date of her heart surgery when we first came here).
Please remember Noah and Ella as they wait for the new hearts and the Adamyk family as they deal with the loss of their little boy, Caleb.
1 comment:
It is wonderful to hear such great news, a few setbacks but overall Rachel sounds like she is doing wonderful, one day at a time as I told your mother and soon she will be walking lots, eating and on the road to total recovery, Judy and Serge Millen (OttawA)
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