What Day Is Today?

The days have officially begun to blur. But whatever day it is, Will is doing significantly better.

This morning, I arrived just in time for rounds where basically they said, "Goals for today: Status Quo." We basically are hanging out in ICU waiting for the trach to be downsized. I have no idea when they will move us out to the floor. We love our nurses (all but one) and are content with their level of vigilence, so moving out means ratcheting back up the level of caution that we feel in dealing with Will's issues.

When I walked into the room, Will was smiling and said, "Hi." No way. The boy spoke. There goes the silence! He doesn't talk a lot because it does take effort, but he is slowly becoming his goofy self. Not long after I arrived, though, both Billy and Will fell asleep. I sat here quietly knitting, watching them both sleep, until I finally decided to head back to RMH to wash the increasingly large pile of clothes.

At RMH, we are responsible for caring for our room. General cleaning and laundering of linens is our responsibility. Our sheets and towels had kinda been neglected for about ten days, so they were washed as well. It is amazing how normal activities are not all that "normal" for me.

When I headed back to the hospital, Will was sitting in a chair watching something on his computer. We hung out for a while then Billy and I ate our dinner in the parents' lounge. Parents are not allowed to eat in the ICU rooms. When we returned, Will actually signed that he was hungry. (Those old days of signing with Ben have been incredibly useful recently!) We ordered up some soft foods and after two bites he decided to go back to liquids. Coughing food out of your airway is challenging. :( So we have now ordered a protein shake that they make specifically for William. Speech pathology will visit Will on Monday and help him figure out how to eat again. Until then, he can have all the smoothies and iced tea he wants. Just no Five Guys burgers. :)

There are several steps involved in removing the trach. The first is to occur tomorrow morning. The ENT team will change out the actual trach tube and put in a smaller one. If this goes well, then they will install a valve, then they will totally plug it to see how he does. Each step requires 24 hours of observation.

The hospital air here is extremely dry which is causing me issues at the moment. My asthmatic lungs are getting pretty irritated. The time spent cleaning and doing laundry today at the RMH helped immensely. It doesn't hurt to breathe anymore, but the more time I spend in Will's room, the harder it gets which makes life a little challenging. Billy has been really helpful and has encouraged me to sleep at the RMH instead of in Will's room, so except for the first night, Billy has handled all of the nights. It has been really strange to leave Will at the hospital, but I have been grateful for the rest and the reprieve. I did not realize how much I had been holding my breath, metaphorically speaking, until today.

So, another day passes with a beautiful sunset outside of our ICU suite. (We totally have the best room in the entire hospital! It is like a hospital room with an attached sunroom.) The thought of leaving our comfy nest and our nurses whom we love is sad indeed. Home sounds wonderful, but another room without the spacious, sunny accommodations will be an unwelcome change. :)