February 11, 2020
Time to play catch-up again. So for the delay between I know a lot of you are following the going ons closely but...sleep.
Since the last update we have seen some major progress in Olly. Her breathing is much improved with the rattlely, junky sound she has had is much quieter and we go for stretches of the day where we don’t hear them at all. Her cough is all but gone, really only coughing in an attempt to clear stuff from the back of her throat. Overall she is resting fairly well considering people keep coming in and messing with her (actually the nurses have been great about letting her if she is sleeping).
Yesterday (Monday) she had the procedure to change her G-tube to a GJ-tube (you can
read more about that in the last post). It was a quickly relatively simple process. In fact Lora and I got to be in the room throughout the whole thing which was a surprise to us.
After having the tube replaced Olly showed a few signs of discomfort but overall had a good afternoon. Bedtime was a bit rough but that might have had more to do with the fact that she had a sleep study and had her hooked up to a bunch of none of which looked comfortable.
Now the waiting game continues. We are eagerly awaiting the results from the sleep study as that will be the deciding factor on whether or not we get to go home today. They just want to make sure she is breathing well throughout the night and that it is safe for her to go home.
In the meantime everyone is proceeding as if we will go home today. Pharmacy has already been in with her new meds, Patient Learning Center has stopped up to make sure know the differences in her new tubes, someone just left after teaching us about the rest of our new equipment. We are leaving with home suction, nebulizer machine and oximetry. Yay for new equipment.
I’ll update again later tonight or tomorrow hopefully with the whole family at home.