They've taken her off IV fluids since she is meeting her nutrition goal with the ng-tube feeds (she still needs the IV for antibiotics).
She spent the night last night in the PICU (pediatric intensive care unit) for her bi-pap initiation, which went very well, considering it was her first time using the machine. She was able to return to the pulmonary floor today. Tonight she will use her own bi-pap machine that we will be taking home with us (last night she used the hospital's).
She's been using the "vest" treatment to help break up chest secretions (this can be used in place of the manual CPT/BD). Both of these treatments are followed by the cough assist machine. She's slowly but surely getting used to cough assist. It's an uncomfortable piece of equipment, to say the least.
We're not yet sure when Ella will be able to go home. She isn't going to recover any more than she has at this point for a couple more weeks, but we can continue her treatments at home to help her symptoms until she's recovered.
However, we have to be trained (and feel comfortable) on how to use all of the new pieces of equipment. Just a few minutes ago Michael and I used the cough assist and suction on our own!
We also have to have all of these pieces of equipment ready for Ella at our house when we bring her home. Some will be here (her bi-pap is already here for her to use tonight), but others are being delivered to our house. Once they are at our house, someone from the home assist company will have to set up the equipment for her (adjust sizes, settings, etc.). As of now, her Vest is being delivered tomorrow (Saturday) and her cough assist, suction, humidifier (for bi-pap), pulse-oximeter, and ng-tube pump will be delivered on Monday. They are trying to push for those things to be delivered tomorrow, but we were told it is very unlikely since it's so late on a Friday. So we'll see.
She will be keeping the ng-tube in place for feedings when we go home to make sure she's continuing to get the nutrition she needs. Once the RSV is gone in a few weeks she will have the g-tube surgically placed. The surgery is inpatient and will be done here at Children's.
Michael and I are tired and overwhelmed. We miss Ava and Henry (they can't visit because they are under 12 years old). But we wouldn't want to be anywhere else with Ella right now. We have no doubt that she is receiving excellent care, provided by professionals who are very familiar with SMA.
We're excited to go home, but nervous because of how different life will be. We will once again have to get used to our new normal.
And in time we will.
