Brendan had a really good day interrupted by a few furious ultimate meltdowns. After one particular meltdown, he suddenly went up about 10% on his O2 saturation. The doctors say that crying helps open up his lungs, so I guess we just have to make him mad more so he can get better!!

After analyzing his bubble study, the doctors believe that instead of new collateral veins, we are dealing with blue blood coming through his lungs and in to his heart. Instead of filtering out the bubbles and oxygenating the blood, the right upper lobe is allowing the blood to just pass through as is. So taking him to the cath lab is not going to help. If his lung can’t heal itself with enough time, then they would consider closing that right pulmonary vein and doing a lobectomy on the right side. The doctor was explaining to me that no lobe is better than a bad lobe and that if they did have to take out a section of his lung that it would not cause him any issues in his future.

I am eager to hear what they want to do on rounds tomorrow after Brendan jumped up to sats in the mid 70’s today. Hopefully he can hang on to that through the night and continue to go up. The pressure support from the cpap is what is keeping his lungs open but it is preventing his Glenn flow from working efficiently and may be causing headaches. They put Brendan on the OR schedule next week for a tracheotomy. If by next week he still needs pressure support, he will get the trach. If he is stronger and his lungs are better, they will cancel the OR date.

And so we continue to go in circles!!

Brendan was feeling good this morning. On top of having a better balance of his pain meds, I walked in right after he had his breathing treatments, so he was feeling a bit silly.

You would look goofy in this too

I am amazed that with all that is going on, he can still smile.

Trevor got a nice selection of new jammies in a 9 month size. He also got some adorable new jeans and socks. I love babies in jeans!

As if we need any other drama to make this week more trying..

This morning when we walked in to the room, someone had gone and packed everything up. All of our personal items from the closet and drawers were jammed in to bags and piled on to a wagon and under his crib. It looked like he was about to wheel out the door. The nurse was clueless about it though, she said he wasn’t going anywhere. It was very unsettling. They wonder why I feel like I can’t go home and rest – every time I am gone something happens and then nobody can explain it.
It turns out that due to staffing issues, they were about to move Brendan to another room. They packed him up and he was ready to go and they changed their mind at the last minute. They didn’t even think it was a good idea to call me and let me know that he was being moved or that all my stuff was packed for me. Even when they didn’t move him, they could have warned me before I show up to the hospital and think that I had been robbed when all my stuff was missing (or just packed).
Brendan had a pretty rough and uncomfortable night and was unhappy this morning. Even though he finally fell asleep while we were there with him, his cpap ventilator alarm kept ringing like mad because the mask wasn’t fitting right and it was reading a pressure leak.
After a total meltdown and a mask change, he seemed to get some rest and his numbers looked better than ever.

Add to that a doctor on duty today who answers questions or attempts at conversation with as few words as possible and I was feeling seriously crabby. He indicated that Brendan was making progress, however slow. All this misery for him will be over eventually.

Trevor is getting familiar with his high chair a little at a time. We brought it in to the living room and took the tray off and let him just sit in it a while.

Gramma was talking to Trevor but Eins thought she was talking about treats so he listened in too.

Trevor was having fun in his chair

Since he was comfortable, we added the tray. He was fine with it since it held up mirror baby

He didn’t look so small in the chair until we put the tray on!

Brendan had a much better morning today than yesterday, and it is primarily due to two things – he started his methadone again and he had a fantastic nurse. The methadone gives him a more level feeling of comfort, it is long acting vs the morphine that knocks him out for an hour and then goes away so quickly.
His nurse was just so kind and gentle with him and she was wearing a very wild black and white scrub top that he loved to stare at.
They are pretty much going to coast through the weekend and let him recover from surgery, and then we will have a decision about how to proceed.

I took Gramma with me to the hospital today, and fortunately she got to see him on one of his highs.
They are using a little cone mask for his breathing instead of the little prongs that go so far in to his nose. The cone is definitely more comfortable, but it is much easier to get loose. He has his beanie army of assistants too!

The puppy holds his breathing tubes at the right angle, the lion is keeping his pacifier in, and he has a koala providing some support for his knee so that he doesn’t turn his hips out the way he likes.

The respiratory technician takes the mask off to give him a break, the apparatus obviously damages his poor skin. She took the handheld mask away from his face long enough for me to click a picture with no cannula. This poor baby’s face has been through it all.

Gramma and Brendan

He got his chest tubes out yesterday morning, and his incision is healing very nicely!
Brendan’s chest

Trevor got to take a ride with Daddy today in the big truck for the first time! At first he didn’t like it one bit, but he got used to it. Gramma was happy to see him when we all got home.

He didn’t have any special holiday outfit, so he wore a green dinosaur and green socks.

He makes the best faces! I can’t help but want to nomnom on those chunkly cheeks!