Compared to the rest of this week, I would say that Brendan had a good day. He was more tolerant for some things and only had a few little melt downs. Given how much Trevor loves his mobile, I stopped at Walmart at 5:30 this morning on my way in to the hospital and bought a mobile that would work for Brendan. (Walmart is much nicer that early!) Brendan was alert and awake enough to watch the little animals go around. He was on the little hanging zebra like a hawk, tracking its every move.

I came home around lunch time and Bill went back for the afternoon. He was there to see a transcranial doppler exam, they were examining the blood flow in Brendan’s brain. He was very calm for that test too, Bill had to even flip him over and he didn’t fuss too much. He had to have a few doses of morphine today, but they seem to be fairly long lasting for now and are not totally knocking him out cold. We are not sure if the gabapentin is doing anything for him either.

His heart cath is still on for tomorrow at 10am. The bronch hopefully before that, they are trying to work out the schedule. I will be there at 6 again to spend time with him before everything starts.

When I got there, his beanie goat was missing. We did eventually find it in a pile of laundry on the floor, but it needed cleaning so I brought it home. They replaced the goat with a lion, a koala and a black puppy dog.

This is the “I dare you to touch me” warning look

Watching his new mobile

Up to old tricks!!!

Trevor was a good boy today. He used his jedi mind tricks to get a bath from someone newwww.

“hey, I said it was not time to get out!!”

Trevor was such a big boy, he slept all night in his crib. He only had one bottle at 3am and we all slept in until 8am! He spent all morning with Daddy while I went to the hospital to visit Brendan.

The good news there is that they removed the huge cpap mask and switched him back to the regular high flow nasal cannula. He has been doing well and maintaining his O2 sats in the low 80s, but you can see the difference in his chest. His little muscles definitely cause retractions more when he does not have the pressure support. I am not confident that he will not end up back on the cpap, but we will see.
He is back on morphine now to keep him calm, so he had a pretty good day. He spent some time awake and alert and I even held him for a few hours. When I left, they had given him a pretty strong dose so that they could change the dressing on his PICC, so he should have slept most of the evening. I will be heading back very early tomorrow to miss traffic and be there for rounds. Bill has the day off work for President’s day so he will stay with Trevor again.

This was Brendan when I arrived this morning. He was very squirmy and trying to get out of the cpap.

This was his relief when they switched out to the regular cannula, he still has the marks on his face.

All snuggled in to rest, but giving me the “you are on my list” eyebrows

A little Brendan video, before he finally released the angry brows and relaxed.

Trevor has a hand mirror in his bed so that he can talk to his bee beads and his mirror baby at the same time.

Some cute pictures of Trevor watching his mobile:

I thought that today I could use a break for my mental health and I did not go to the hospital. It didn’t help much, instead of getting a headache from the smells and alarms in the hospital, I worried too much and felt guilty for not going to visit. I did enjoy my time with Trevor today but even he was feeling cranky and cried a lot today and needed to be held.
Bill went to the hospital and spent the entire day with Brendan. He came home long enough to log in to do some work and then went back again to be there to meet the night nurse.

Brendan is doing well from a respiratory standpoint. The doctors are really happy with how his lungs sound and his color looks really good. The weaned down his pressure support and O2 level and he is doing better. But he is absolutely miserable without heavy drug interference. They even had to start using morphine again today which I find upsetting. We expressed to the doctors our concerns about dependency and also the fact that he will need the morphine and fentanyl for when he has his surgery and they need to work for him. He should not be working on building a resistance to it now. It already takes a larger dose to have an effect. The Gabapentin will take some time to kick in. The Ativan is already not working for him like it used to.
We just have to hope that he will get better every day and can get some relief from the pain so he does not have to be like this all the way until surgery time – whenever that might be. I am not sure I can handle months of this waiting.

He does have some moments of awake time without crying, but he is very easily tipped in to a total crying meltdown. Bill was usually able to calm him and was real firm with the nurses and doctors about disturbing him as little as possible.

Trevor got a super long bath this morning and then gave me the same pathetic crying he would use on Gramma when he got out of the tub. He got all dressed up pretty today but had nowhere to go.

The shorts are cute but not real comfortable for naps so he put on some soft pants. Don’t we all just want to lounge around in soft pants?

He would only sleep today if he was next to me so I could keep his little legs moving.

Trevor does love his mobile. I think the lion is his favorite. He talks to it a lot more than this usually, but I love the smiles in the video.