She has RSV (respiratory syncytial virus) which has led to pneumonia. It started as a simple cough/cold, but it is difficult for someone with SMA to cough up the secretions to fight off the infection, thus it can lead to a more serious illness.
So here we are. The pulmonary department of Children's Memorial Hospital in Chicago (however, we will soon be moving to the PICU).
We met with the entire pulmonary team this morning. Everyone we have spoken with is incredibly knowledgable of SMA (which is such a great feeling). Ella is in SUCH good hands here. The attending pulmonologist wants Ella to stay until her lungs are clear and she's stable enough for us to continue her care at home.
We were told to plan on staying at least through the weekend, if not until next week.
Wow.
So far Ella's treatments have included the following:
- Oral antibiotics
- IV antibiotics
- IV fluids
- ng-tube (nasogastric tube) for feeding
- CPT/BD (chest physical therapy/bronchial drainage) every 4 hours
- Cough assist machine (forces air into her lungs, then rapidly sucks it out, simulating a cough) every 4 hours
- Suction to remove secretions from her lungs
- Nebulizer treatments
- Bi-pap machine (non-invasive ventilator) during the night. Soon she will be moving to the PICU for a few days to get this piece of equipment set up for her.
All of these treatments (minus the IVs) will continue when we get home (and most will continue on a daily basis even after she is healthy).
Once the infection clears completely (in a few weeks) we will probably have a g-tube surgically placed for feeding assistance.
So right now our goal is to get her lungs cleared using these aggressive interventions and have her become stable enough to go home.
I would say we're overwhelmed, but that doesn't quite do it justice.
Our lives are going to be completely different now. In the past 24 hours we went from Ella being independent of medical interventions to being dependent on a variety of pieces of equipment that she will use on a daily basis for the rest of her life.
I don't think we're going to know what to do when we get home.
Of course, Ella is being the trooper that she is, but there's no question that she's uncomfortable and doesn't enjoy being confined to her hospital bed. And saying that these interventions are uncomfortable for her would be quite the understatement. They will all take some getting used to.
Thank you for your continued prayers for a quick recovery for her.
