Day 94

Well much has happened here in Bella's world since my last post.
I'll start with the fact that I had a small break down..., decided that I was tired of watching and waiting. I wanted someone to do something...unfortunately it was about 2:00 am and sending my husband to talk to a Dr at that time was not very productive. So our wonderful, incredible, amazing Primary nurses took control of my insanity and set up a care plan conference with the Dr. We were able to listen and ask many questions about where we are today. He gave us a gameplan which was dependent on some tests being done. However God decided we needed to expediate the plan and right after our meeting Bella took a turn for the worse. Her sats dropping into 60's for an hour and nothing could bring her up. So we have done the following:

-Bella started another course of steroids. Her lungs are not getting better on their own. She needs help and we really need to get her off of this vent.

-Although clinically she doesnt seem sick besides higher oxygen needs they have started some antibiotics. I have wanted this for days, for some reason I can't shake the thought of infection.They have done another blood culture to see if they can find anything.

- Her blood gases are getting worse again so she is up on her vent settings. Hopefully the steroids will help w this.

-And the one we have been waiting for is the Echo for the Pulminary Hypertension. The Dr already started her on nitric oxide which is the best treatment for the condition. The Echo was just done and the cardiologists confirmed that there are some signs but it is not at a dangerous level yet and we should just continue with the nitric oxide treatment. I will get more info from the Dr soon on this and what those results really mean.

She is stable, alert and beautiful...there are some scary challenges ahead but we are holding tight to our faith. More to come...

Much love to you all
Telisha