Hospital Stay: Day 13

This morning we took a trip downstairs to Starbucks. It may surprise you, but Toe completely charmed the woman behind the counter. Apparently she has a twelve year old son who is a goofball. They had a great conversation.

So. Today was the day. Toe did his PFTs and they had improved significantly. However, as he blew, we heard a mucus-y rumble in his breathing. They want Toe to have great PFTs and also be symptom free (or close) before he leaves. We talked with the pulminologist on duty and decided to stay the night and see how Toe feels over this next 24 hour period. He says he has some tightness in his chest and just doesn't feel right yet. They want Toe to have a really great 24 hour period before we go home. Or Friday. Whichever comes first.

Transport to PFT testing

PFTs measure the volume his lungs can hold and how forcefully he can draw in that air and blow it out...

The gown and gloves are for protection in an area where many people do breathing tests. This is to protect others and keep the space clean... The nose plugs were just from the test.

We are noticing his arm is MUCH better. He is able to straighten it completely now and the soreness is gone in the area of the clot. He still is having slight pain in his elbow area, but we think that is at the base of the bicep from him holding his arm tightly for so long. We are now reducing his Tylenol and Ibuprofen and applying heat. Mobility seems to increase each day.

I checked out of the Ronald MacDonald house, so we all three will be sleeping in the room again tonight. J, bless him, takes the fold out chair.

I am ready to BE home; I am not looking forward to the transition to getting there (packing up the room, getting home, assessing the grocery/rotting-things-in-the-refrigerator situation, starting up breathing treatments again, doing laundry, getting the kid ready to go back to school, catching up on homework if necessary, meal prep...).

Random notes: Toe has half and half to drink with his Orkambi - about 8-12 oz. The med needs to be given with fat. We have them keep it in the fridge at the nurse's station and give it to Toe with the meds. The cafeteria has randomly been sending up half and half in addition. Sometimes it comes in a small cup. Today they sent one of the creamer sized things of half and half. One. It just looked so lonely on the tray!

Also, J wanted to clarify that the racing on the sky bridge was DRONE racing (although Ty and Toe chased after their drones).

Note: the arm with the watch is almost straight!