We have seen great improvement in Aimee’s wounds, both her spinal one and the pressure sore. The ortho team is very happy with how those look.
On rounds this morning they discussed continued concerns they have over the lab values for lung function. Aimee has been using the bipap most of the days currently, about 18 hours a day. In fact she was on bipap for the chest X-ray that they took yesterday afternoon. They are looking to decrease her valium/diazapam dose over the next several days hoping that her sleepiness will be reduced.
The medical team is requesting a meeting this week with several specialists to gather together to discuss Aimee’s care. They are hoping to get palliative care, pulmonary, GI, medically complex care, themselves, and us all in the same room to talk through where Aimee is currently and going forward. This terrifies me. Looking ahead of where we are right now is something I have mostly learned to avoid with Aimee.
In good news going into this meeting, when Aimee is awake, she is in good spirits, interactive, and engaged. She is talkative and even laughing. She is watching shows and clearly enjoying them. She is 100% worth fighting to bring home to live life with her siblings. It is encouraging to see her be this happy so soon after surgery. Last spine surgery she was almost depressed for nearly a year afterwards. No matter what this meeting brings, we will keep Aimee’s best interest, her life at home in the forefront of their discussion.
I am savoring time at home with the other kids as best I can. It is so difficult to be torn between the two places, but I love connecting with them here.
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We love to read your comments and encouragements! Messages to Aimee are always welcome too. I will definitely read them to her. :)
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