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.
Happy Easter Bella and Shelly !!!!!
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