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.

Trevor started this morning with a something newwwww. His rice cereal has left him feeling a bit stopped up so we will be switching to oatmeal to see if it is easier on his tummy.
In the meantime, I read online somewhere that giving the baby a few spoonfuls of Vegemite in the morning would help clean him out. I think Trevor liked it, I don’t even like the smell of it.

I can’t just leave it at that, but had to acknowledge today’s date in some way! Trevor’s breakfast actually was baby prunes. He really did like them, and hopefully it will help his tummy feel better. He has already had a better evening thanks to all Gramma’s work.

This baby has officially been around the block. Gramma took him out for a walk twice, doing the 3/4 mile trip around our neighborhood, even turning and pulling his little stroller backwards to keep his little face out of the sun.

Gramma and I went to see Brendan again this afternoon. We had called in last night around midnight and the nurse said that he was having the best night she had seen with him since she has cared for him so we were excited to go visit. Unfortunately when we got there, he was looking pretty swollen and unhappy and uncomfortable.
The doctors have decided that his little body just can’t handle the ventilator sprinting and that they need to just focus on weaning him back to settings that the at home ventilator equipment can handle. They are going to give him full support and focus on nutrition and growth and going home. We will have to work with our outpatient team to get him weaned from the vent. It still will be the end of this month before there is a chance he will be leaving the hospital.
Tomorrow, the surgeon will change his trach tube for the first time. If his stoma has healed enough, I will be able to hold him and he will start to get his physical therapy and tummy time.
The doctor thinks he is making progress, even if I am not seeing it. He says that progress with Brendan will continue to be very slow.