Brendan had another pretty good day, but it was such a busy day!

He had some time like this, I just want to scoop him up and run away with him when he feels like this

He had some time like this, although not as much as he should…but it is getting better!

He had tons of people in and out of his room all day, it is amazing he got in naps at all.

He got switched over to an LTV1000 ventilator today, which is the kind that we will use to bring him home. It works differently than the big expensive hospital ventilators, so it took some tweaking to get him settled in. The respiratory techs and intensivists and pulmonologist all had to come fiddle with it and put in their two cents. There was also a trach-tube inventory completed so that the seven extra pieces that were incorrect could be removed from the room.
Here he has some new tubing to go with the home vent. It will further simplify when the suction piece is removed.

Trevor was on the move again today! No naps for Trevor!!! Maybe 10 minute snoozes here and there.

Look at this face though, how can you be mad at him!!

I have a Trevor video but I will have to upload it for tomorrow’s blog. I am eager to go to bed!!

I am so relieved to be able to write about a GOOD day for a change. Brendan had a very full day today and was pretty exhausted by the end, but as a whole he made some positive progress and had very nice numbers.
They started out with a trach tube change this morning. It made a huge difference for him to get rid of the tight, crusty, smelly shoestrings around his neck and the sutures holding the tube in place. Now he has a nice soft velcro strap holding the trach. The surgeon was very pleased with how his neck has healed up. Even since this morning, I think the swelling in his face and neck has gone down.
They seem to have found a sweet spot for him on the ventilator, his oxygen numbers were also up. He was awake and alert for much of the day, and pretty tolerant of everything they had to do. He was such a champion during the tube change, he hardly cried! He even got a Synagis shot.

This morning right after the trach switch

He was lounging around comfortably through the afternoon

This afternoon, they took him down to intervention radiology to have his PICC line moved. It is now in his left femoral artery and is completely out of his Glenn circuit.

Any time Brendan has to travel in his crib, I cringe. In the hospital, this is what they call a COW – Computer On Wheels. When he went for his trach surgery, they took one out in the hallway. I was wondering if he would be tipping one today during transport but no cows fell.

His arms are totally clean now and he can be swaddled comfortably to keep his hands away from tubes. He wasn’t real excited about having a picture taken, he was still feeling the anesthesia!

Trevor was spaced-out in space this morning

Megamind-Trevor had some tummy time

Trevor with his coordinated socks

The recliner and the remote control! Now he just needs a bottle in a cup holder.

Trevor is way too tall for 6-month size jammies, so we had to make him some cutoffs!

I truly hope that this is the start of a new trend of improvement for Brendan. If things go super-well all week, he may leave the ICU on Monday and move up a floor to a special trach-training unit in the hospital for a few weeks and get all set to come home!

When anyone in the hospital says “I’ll be right back”, it usually means “If you are lucky, I will see you tomorrow”.
This was another one of those days that felt like I had to be dreaming it up because it was so haywire and frustrating. Everything that could go wrong did.
Brendan was supposed to get his trach tube changed out today but at the last second, it was discovered that the replacement tube was the wrong kind and everyone went on the hunt for the right one. If it weren’t for the fact that he had that model/size/type in his neck, you would have thought that the tube they wanted did not exist.
Eventually, the proper tube was located, but by then the surgeon was gone so now it will have to be changed tomorrow.
Brendan will be going to radiology in the morning for a new PICC line. The one that is in his arm is in the primary vein of his Glenn circuit and may be interfering with the blood flow. So he had an ultrasound on his legs today to find a good location.

He tolerated everything very well today, he was such a good boy. He just never was very happy.

When the chaos was done, he finally got a nice nap with his swinging monkey music.

Trevor had his usual fun day with Gramma. He got to wear his cute outfit without blurping on it today. He takes his conversation with his mobile toys very seriously.

Trevor got to meet his Uncle Kevin who was in town on a business trip.

Trevor thinks that Uncle Kevin is pretty silly!

Grandpa Jack moved back to the skilled care facility for rehab today! We hope that he feels better every day and can get back home soon.