Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Tuesday, November 24, 2015

Discharge today!

Angela was admitted to the hospital two weeks ago today, and today she's coming home! Axel and Asher in particular are excited to have her back, and just in time for Thanksgiving! We certainly have a lot to be thankful for this year.

I wish I could say coming home is going to be easy. It will be anything but! Angela has had an insult to her brain due to the high ammonia and glutamine levels. In addition, all her meds were stopped about two weeks ago. The nurses have been struggling with managing her. At this point we really don't know what is "Angela", what is "Brain injury" and what is "I've been in the hospital for two weeks and everyone gives me whatever I want all the time to avoid having a confrontation with me." She is also tired and taking a couple naps per day. I wonder how long that will last?

As for formula, she is now on a combination of two formulas. One gives her amino acids, and the other is free of non-essential amino acids, and has additional nutrients to compensate for the medication she'll be on, along with protein. Everything requires very careful measuring and mixing. Before she got sick we were (per doctor recommendation) allowing her to eat one thing per day by mouth. Usually a pudding cup, apple sauce or other foods she is less likely to aspirate. We will still be able to do that, but need to be very careful that whatever she has includes no protein or we have to compensate with the protein included in her formula.

We're anxious for the long weekend and having Angela home. We have to move bedrooms around again so Angela is closer to us. This whole event started for us on October 6th and we're ready to re-establish our routine! 

2 comments:

Tink said...

Loving you all...sending more strength energy for you <3

eliz said...

Praise God! Still praying! (((HUGS)))