Here we are, day 4 at the Johnson City Medical Center PICU. Wednesday, in particular, went so well that we thought maybe we were homebound, but that may not be the case. Half way through the day Emily's heart rate started going up and she was needing more O2, so now were up to 3L of O2 and back to respiratory treatments every 2 hours. Each one lasts about 30mins or more, to give you an idea of our schedule. The respiratory therapists have only been able to get in every 4 hours, but often are not able to stay long enough to finish the treatment. So, even though this hospital is compliant with our plan of care and very kind, the Respiratory Therapists are:
- not familiar with our equipment (cough assist) and our drive for noninvassive ventilatory support (NIV protocol)
- not familiar with weak neuromuscular needs (they are different from other needs - VERY different)
- severly understaffed from what we have seen this week. They have had too many patients to care for to get adequately involved in Emily's care, or any other individuals care for that matter
Anyway - Most of the respiratory therapists have been friendly, and that is nice. A couple have taken particular interest in Emily and our level of care for her and they have been as helpful as they can be. Today I had a frustrating conversation with one, however, when the appropriateness of our care of Emily was challenged. Thankfully the words in my head didn't match those that came out of my mouth, but it was very frustrating to have to explain airway maintenence and clearance to a respiratory therapist. I provided a copy of the Standards of Care for SMA document and pointed out the Pulmonary section. Hopefully they will all read it and learn something valuable for future SMA families that might end up here.
OK - it wasn't all that bad today. My text above sounds kinda depressing. We're fatigued and ... gotta get some sleep now.