I did not like today.

I did not sleep a minute last night because of my sore throat and dripping nose. I drove Gramma to the airport at 4:30am (she made it home safely!). I could not go see Brendan and I miss him. It is very unsettling to not visit him every day, and I probably will need several days away.
The nurses have assured us by phone that he is doing well today.

Bill’s family is working on arrangements for Grandpa Jack to go home to his own house with hospice care. Tomorrow there should be more information.

Trevor seems to be feeling OK, not showing symptoms like I have. He was a bit cranky for the last half of the day but took several nice long naps. He hasn’t pooped since Wednesday again and is starting to have trouble taking his bottles. I really hope that he can get his tummy issues straightened out. He will be seeing his pediatrician real soon for his 6 month checkup so we can talk about it again.

He keeps his fingers and hands in his mouth all the time and drools non stop, so he may have some tooth buds forming. No sign of them visibly.
We bought him a wrench to use on his gums, it is nice and gummy and cool from the fridge. He likes it until it gets warm!

It matches his Daddy’s Little Helper shirt!

Thank you very much to Lisa and Leonard (and Lex!) for dinner tonight. It was a bright spot in a gray day. Trevor obviously has a new friend!

Sorry about complaining for the blog today! Hopefully tomorrow I will feel well enough to be productive if I can’t be at the hospital.

The bad news today is that I have a sore throat and a runny nose that started this afternoon. I was at the hospital when I noticed it. Bill started to feel it too. If we are getting sick, we have to stay away from Brendan. Trevor seems extra tired today too, so I am worried that he might be fighting the same thing. It is not what we needed to deal with. Brendan has been on an antibiotic and will continue for a while. So it is possible that we are getting whatever he had, or that he will be protected from what we have as long as it is not viral. I hope that we can fight this off quickly. Nothing is planned for Brendan this weekend, he is coasting until next week when they will make another attempt to switch him to a home vent.

The worst news is that Gramma has to get on a very early plane tomorrow morning and go home! Today’s post is just a bunch of pictures of her last day with the boys (until she gets another plane ticket to come back!)

There will be no Brendan pictures tomorrow so I am posting extras today.

Lounging!

He seemed comfortable when we got there

He peeked his eyes open enough to see us and gave us a little sleepy smile

Gramma’s smothering!

Oh silly Gramma

Gramma got to hold Brendan for a while

He had a comfy little nap

Trevor is only crabby when he wears his crabby clothes

Trevor got a lot of cuddle time in too

Gramma had to tell him she was going home tomorrow

Tummy Time Trevor video!

Brendan’s fever was gone today and so far cultures have come back negative. He is staying on at least a three day course of antibiotics anyway for coverage until the rest of the cultures are done.
He was having a pretty good day today. He was smiling at times, quiet and seemed comfortable on the NAVA so he was just able to rest. The doctors will not be trying to push him to the home vent again this weekend. They are going to give him plenty of time to recover and rest before they test him again.

The physical therapist sat him up for play time and then he got snuggled in on his belly for a nap.

We are working on playing with different toys like bumpy rings. Brendan must be thinking about how he can use this ring to get a tube out.

He was good at throwing away the rings

Captain Calamari hangs from the vent arm

I did my first trach change today and it went very smoothly. Brendan handled it like a champion, he stayed nice and calm. I suppose all of the drugs have a lot to do with it, but he didn’t need any extra doses today at all.
While we were doing clean up, I changed out his whole ostomy base and cleaned him up. Then he got his mobile and had a nice long nap.

Bill and Gramma decided to reorganize the living room while I was at the hospital. We had been having a million discussions about how to most efficiently set up the room for when Brendan comes home. I think we have found a configuration that will work well and it was an awesome surprise to come home to all the furniture moved and the floors so clean! Trevor helped too. After all, he was wearing a 12mo size onesie today, he is BIG!

He likes the recliner in its new place!

He is just lounging on the couch with a fish.