Day 75

Things were looking really good yesterday...now they aren't. I am so tired of this emotional roller coaster it's about to drive me nuts. Brianna has been put back on a machine that is like a ventilator. It's called a nasal CPAP (constant positive air pressure). Because of all the medication that she is on, it has made it very difficult for her to breathe on her own. This was the step to be taken before putting her back on the ventilator. On Wed they had to add another medication to her list because she started showing signs of seizures again. This has completely 'knocked' her out. She hasn't been awake since 6:00 Wed night. This was my wake up call this morning...I am completely devasted. We were on track to be coming home Monday or Tuesday...now I'm feeling we may never get home. I am trying to keep my chin up & be positive that she will pull through this just like she has all the other times...but it is really wearing on me. I have really begun to think about her quality of life. How long do we continue to help her? Are we really helping her or making her worse? So many things to think about. Nobody deserves to live the life that may be in store for her, but how do you, the parents come to that decision.

Since they have put her on the CPAP, she has started to turn back around. Let's hope that it continues. I will send another update today or tomorrow.