This was one of those days that ended up being NOTHING like I expected as I rolled out of bed in the morning. Trevor got up at 6 this morning after a nice long night of sleeping. We had some tummy time and sitting up exercises in bed.

MONKEY SEE

MONKEY DO!

Gramma stayed home with Trevor, Bill had to work and then had a dental appointment. I left for the hospital in the morning to go spend time with Brendan.

Brendan was not as silly as yesterday, but it was determined that many of his issues now are related to withdrawal from all the drugs they are trying to wean to prep him to go home. He has a very tough road to travel to get all the drugs out of his system, it is going to take a long time and be uncomfortable at times.
I learned more about trach care and helped change his ties and get him all clean. We had a family meeting in the morning where I was able to voice a number of concerns about the next few weeks. Coming home is going to take a ton of preparation! I thought it was a pretty good day.

I try to give Brendan something to grab to keep him from constantly grabbing his tubes

Brendan went down to imaging this afternoon and had a barium swallow study. He passed, and now has the go ahead to start working on bottle feeding! When he got back from that, the occupational therapist was waiting to work with him. Originally OT and PT were going to work on how to get him comfortably on his belly. But with a tummy full of barium, they decided to skip that for the day and just did more sit up time.

But then… it was a race for people to get to me to tell me that the visitor restrictions had be lifted!! Every winter, the hospital has to go on lockdown and forbid children under 12 in order to prevent the spread of flu and RSV to fragile patients. Now that restrictions have been lifted, we still have to proceed with extreme caution, but Trevor is now able to visit his brother!!!!!! The last thing we need is for Trevor to get sick, and a simple respiratory infection like a cold would be very serious trouble for Brendan so we will still have to limit exposure.

I was very excited and called home so that as soon as Bill was done at the dentist, he could come and bring Gramma and Trevor too! Gramma hadn’t seen Brendan since Sunday! Trevor hadn’t seen Brendan since he left for his clinic appointment on January 31st and ended up getting admitted. Both boys were all about taking a nap, we had to wake them up to have some time together. They were tired but did so well!

Separately, it did not seem like there was much of a difference in color between the boys. But together, Brendan’s red/blue hue was really obvious. Especially when he has been sitting up.

Gramma and the boys!

We tried to get a nice group picture, but Brendan was getting tired and started giving the famous lip/chin sad face that gets him anything he wants with the nurses.

Brendan was done with sitting up time. Trevor was not sure what to make of his brother’s silent crying.

Lying in bed, much better!

Trevor thinks his brother is pretty cool and can’t wait for him to come home.

But then we told Trevor that he will have to share the kitchen sink and take turns with bath time!

I am exhausted tonight. I can’t tell you what an emotional day it has been. It is starting to sink in that Brendan may be out of the hospital soon. While I am not looking forward to handling the trach and vent on top of his other issues and the extra worry, we are confident that we will make him a hundred million times more comfortable and happy than he is in the hospital.