We have moved

We are now in the PCU, rather than the PICU.  She has her own room, and she’s still on the same monitors, but the nursing ratio is 1:3 rather than 1:2 and vitals are taken less often.

When they did rounds today I asked why we were still here.   I needed to understand the plan, which I have learned they won’t share with you unless you ask directly.  She continues on 2 liters of O2 and continuous NG feeds (which have been great!  She only spit up once since we were admitted on Thursday!).  All of her meds are PO (by mouth).  I can do all of this at home.  But – they started bosentan (Tracleer) on Thursday and they need to watch that.  AND – this one I really like – Dr. Mallory (our PH doctor) has asked for a multidisciplinary meeting on Monday to talk about Bella.  It is hard to have those meeting when the patient is outpatient.  I’m hopeful they will come up with a good plan at that time of how we will attack this.

They want to do the CT scan of her chest and a swallow study.  The swallow study will help us understand her lack of eating and possible aspirations.  It might also lead to a g-tube.  We’ll see.  The CT scan will help us figure out how sick her lungs are.  Terms being thrown around: pulmonary hypoplasia and lung growth arrest.

It’s very interesting to me to learn more and more about Bella’s lungs.  Last year we were trying to adopt a little boy from Ukraine.  He was two years old and had a lung problem.  All of his paperwork was completed and in my hands one day late to submit to the Ukrainian government for the calendar year 2008.  The day I realized we were too late, I got the call about Bella.   As things have unfolded I have been amazed at how we have been prepared for Bella and her medical condition.  He does know what He is doing in all this.