Seems we are going to be at the hospital awhile longer. She's not "sick" with any bugs causing the excess mucus and swallow issues and pain. Guessing Tay-Sachs is our culprit in the regression of swallowing and breathing and neuro pain. Giving her pain meds and acid reflux meds today.
Other options include different meds (with varying unfavorable side effects), surgery, full time high flow (which is not transportable), and cpap. All are on the table, taking it one step at a time.
So now it's trial and error figuring out how to keep her airways clear and minimize secretions. We will take it one med/treatment at a time, see if it works, and if not try another.
Today we are giving her feeds and working up to her normal 50mls/hr by the end of day. Also trying a cough assist (makes her cough) to see if that helps. Will be given after nebs 4x per day.
Drs are working with our neurologist as we have a new type of seizure (smiles, staring, then tons of blinks). Currently we are changing her anti-seizure meds and adding a med to help with the pain that also has been known to help with seizures. The hope is that is enough and we don’t have to add any more meds.
Drs are also trying to see if we can get pca/nursing at home through insurance. Whatever
treatments work/we decide here will also need to be done at home. We are already stretched thin- and they don't feel comfortable giving us more without help of some kind.
On a very positive note - Olly got a bath last night and squealed, smiled, and kicked her legs to splash. It was great to see her not lethargic or in pain for a short time. Mara also got to come see Olly on Thursday night.
Prayers much appreciated over Olly, direction on treatments, and Mara- she's a trooper!!