Oh Bella! The littlest things are so hard for you. A simple sponge bath took 6 hours to recover from today. The O2 had to be turned up and she was so fussy. She vomited three or four times. It’s days like this that I look around and think that I need to make contingency plans for the kids for if and when we have to go back to the hospital. My mind doesn’t want to go there.
I watched Divine Design today – what else can you do when you are holding a baby that is attached by a 3 foot long tube to her huge Oxygen tank? The episode was filling the “Make A Wish” wish for a little girl who has been in and out of the hospital her whole life. That one got to me.
Most of the information that I read online about pulmonary hypertension is about primary PH, not secondary or associated pulmonary hypertension (the kind we have). So I’m having a difficult time learning more than basic information. I told my sister-in-law that I wondered if Bella would ever get off of oxygen and she reminded me that I had wondered if Bella would ever get out of the hospital. True.
Time. We just need some time.