I had a rough early morning with Brendan. He was so uncomfortable all night, tossing and turning and sitting and rolling. He didn’t want to be touched and yet he wanted to be held. I felt so bad for him. Just when he would finally get to a comfortable spot, someone would come in and want to do something to him. At 4am I was having to argue with the respiratory manager about using Brendan’s home equipment and he would not relent and insisted that they had to use the hospital’s vent circuits and heaters. When they switched him out, Brendan got worse, just like I said he would.
I was up all night either comforting Brendan or deflecting stethoscopes. I may have had 2hrs sleep with a few 10-15 min catnaps here and there.

I was relieved this morning to see Bill and my Li’l T. They brought me my supplies! Fresh water, coffee, 5hr energy, Mucinex, and lots of hugs.

Trevor can’t stay in Brendan’s room for long, he goes nuts wanting to explore. He broke out the nurse’s emergency flashlight and was trying to get in to the under-crib storage area.

This is why at home we got round door knobs with a firm twist. Trevor kept going in to the bathroom.

I think they were happy to see each other

Bill took over the Brendan-care and I took Trevor home.

Trevor was supposed to take a good nap so I could rest, but he thought an hour and a half was enough. It was creepy-quiet in the house without Brendan there, but Trevor and I had some good one-on-one time. He helped me do a ton of laundry too! He likes to do all the button pushing on the washer and dryer to start each load, and he runs the lint from the lint trap to the garbage. Our washer has a glass lid so he likes to see the water pour in and the clothes start to spin and agitate. If only it would last!
After I fed Trevor dinner and gave him a bath, I got him in his pajamas and we drove back to the hospital. A quick exchange and Bill took him home to put him in bed.

I am here with Brendan for the night again. He has been moved down to the Cardiac ICU and we are very grateful. All the staff here know him so well and even in one night, you can see the huge difference.

Brendan’s cultures came back with a plain old rhinovirus. Big surprise – that is what Trevor and I had/have. The trouble is that instead of getting caught in the nose and sinus like a normal person, the virus went straight in through his trach to his airway and caused all the inflammation that is causing him to have so much trouble breathing.
This is what we try to explain to people all the time, why we weren’t allowing many visitors when he was younger and even more fragile. Even the most simple bug that is “no big deal” to most is very serious for Brendan. Not many people have go to the ER with the common cold.

Brendan continues to get breathing treatments to keep his airways open and he is getting his IV steroids to help with the inflammation. We took him off the ventilator today because he is strong enough to breathe without it! That is a big deal, we don’t want to get stuck on the vent again!
He is on a ton of oxygen to keep his numbers right, but his heart rate is beautiful and he is actually getting some good deep sleep tonight.

There was no bacteria to treat in his cultures so there will be no antibiotics or other medications. He just needs to fight through this like me. My nose was super drippy and I was sneezy today but if Brendan sleeps, I can try to sleep.
We are in a room with a flytrap couch instead of a chair to sleep in, but the flaps actually stay up on this one. 🙂

We love the message that we got from cousin Caleb today for Brendan, so I wanted to share it here too. Thanks Caleb, you are sweet as can be!