It was a hard day of waiting, and the hardest part is that the waiting continues. Brendan had his catheterization and his bronchoscopy today and made it through both procedures with no serious issues. He came back to his room still on the breathing tube/ventilator because the bronchoscopy can cause irritation to make it difficult to extubate after the anesthesia. They plan to extubate in the morning if all is well. They are keeping Brendan sedated with Ativan and Fentanyl and using restraints on his little hands if needed to keep him from extubating himself. We have all seen how his little pinchers work and he will be all over pulling that tube out if given the opportunity.

We will not know anything about the results of the tests today until the doctors have had a chance to do lots of math, study the results, and get their heads together about what they saw. The little information we have so far shows that there is still contradiction of opinion between some of the doctors. We will be having a “family care conference” soon where all of the specialists from all of the fields will get together in a sit down with us and really discuss his treatment and make sure they are all on the same page with the same goals and priorities. Hopefully that will be in a day or two and we can move forward.

What we did hear today from his cardiologist was some good news. I think he was just trying to cheer me up some but the facts are still the facts. He says that even though Brendan’s anatomy is different that yours and mine, he still has a strong heart. They like how it is working and they did not find anything surprising during the cath. He insisted that once Brendan can make it through his heart repair surgeries that he should do very well. Getting him there is going to be the hard part but there is a bright light at the end of the tunnel for him. There is another baby named Brendan on the floor a few rooms down from us. He has had several surgeries already and is 18 months old. They have exhausted all of their options with him and he is now on the donor list to receive a heart transplant. In all of the things that my Brendan has gone through, I am eternally grateful that this is one of the things we are not facing. The agony of wanting your child to live and grow, but knowing that to do so requires that someone else’s child must die to make that organ available – I just can’t imagine it. We say hi to the other Brendan every day when he makes laps around the floor in his stroller and I feel for his family so much.

This was Brendan before he left for his procedure. He had been given Morphine and Ativan just a few minutes prior to the picture so he was pretty checked out.

He came out of his procedure with the breathing tube but the cannula was still there

They got him all retaped and bundled up, hopefully he will have a good night. He gets over the Fentanyl really fast, so keeping him calm and still will be a real challenge.

Trevor stops all of the cute things he is doing to make camera face whenever I try to take his picture now.

I am squeezing and cuddling my little Trevor, making the most of my time with him at home

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: