It was an uneventful day – just a day of rest and healing. I got to the hospital at 6:30 this morning and Brendan was still asleep.
He had a good morning, he was more comfortable and really loves his pacifier. We talked for a long time, me talking and him giving me the little eyebrow lifts.
He let me do a full mani/pedi and trim his giant claws back, and I gave him a little sponge bath and he stayed happy. He took a couple of short little naps in between.
I left him to watch his mobile for a while and he fell fast asleep.
The boys traded today. Since Brendan was so calm and cozy, Trevor decided that he was going to try out a day of being extra cranky. He still played nap avoider, sleeping for about 3 minutes this evening so far. He is drooling like a waterfall and can’t keep his hands out of his mouth, so we wonder if he isn’t starting to get teeth bothering him.
He still wore a cute outfit, but he would not do his trick today. He just made camera face when I tried to get a video!
Last minute edit to add a silly video. Trevor still isn’t doing his trick for the camera, but he has some funny things to say. Sorry for the bad quality, it was dark. Turn up the sound and listen carefully!
One year ago today, it was me in the operating room. After so many years of trying to have a baby and hundreds of injections and tests and ultrasounds and dollars, three eggs were harvested directly from my ovary. Only two were good and on the afternoon of March 27th, 2011 they became viable embryos in a dish. All we could do then was wait to see if they would “take” when they were put back in to my womb. After four days of watching them grow under a microscope, those little blobs of 8-10 cells were transferred to me.
One year later, my two little bros are here, about 30lbs together!
I’d go through a hundred surgeries if I could take back all of the procedures that Brendan has had to endure. Today was another step in his journey, hopefully the next surgery he will need will be to finally reverse that ostomy!
The anesthesia team came to pick Brendan up in his room at 11:30am. There is one thing that is certain: If I ever need friends to help me move, I will NOT call on any medical professionals. His transports have always been the clumsiest things, and today was the worst!! They were banging in to walls and in to each other. They got his IV pole stuck in the elevator and nearly crushed my arm that was holding the door for them. Good thing Brendan enjoys the bumpy ride! It is amazing his crib made it in one piece though.
It was a quick surgery, he was heading back to his room less than an hour later. It was difficult to not be so excited to see him today, finally seeing so much of his ultra-adorable face. But getting the tracheostomy is just the beginning of a very difficult rehabilitation of his lungs. He may have this trach for a few months or a few years. It is all up in the air, and it is all up to Brendan.
Here are the last shots with the breathing tube taped in his mouth.
And the cutey-pie comes back with a whole cheek free from tape
His face and head is a bit swollen still from his Glenn, but he still has some pretty nice cheeks that were hiding
He woke up quickly after his anesthesia, all full of attitude!
He was so happy to have his pacifier without the tornado of air from the cpap trying to blow it out of his mouth. A little extra morphine and he was out for a nice long rest.
They used a cuffed trach tube, so it has a little air bladder that fills his trachea and seals it in to place. This creates a seal so that no air leaks from his new stoma while it heals. It also means that he can’t even make a peep or a squeak. He is totally mute. While he was awake, he spent some time getting reacquainted with his face. I love his little eyebrows.
Trevor and Gramma waited at home for news.
This is Trevor while Brendan was in surgery
This is Trevor when he heard his brother was OK.
Trevor has a new trick that he is working on, hopefully we can have a video to share tomorrow!
It was a very stressful day today.. leading to another day of nail biting tomorrow. Brendan just could not get comfortable today, no matter what they gave him and he struggled to maintain his numbers. There were lots of people in and out of his room, and in the ICU that is never a good sign. Right now, he is resting, but still sitting with saturations in the low 60’s.
He went for a CT today and the preliminary reading from the doctors indicates that there are two tiny collateral veins, but they are too small to coil during a cath and insignificant when it comes to the blood flow, so that is not causing his trouble.
The CT did show bad lungs and that is what it boils down to. His left upper lung was totally collapsing again today, even on pressure support. They ordered a chest ultrasound to get a better idea of how much fluid was still surrrounding the lung and what might be involved to drain it off. It may be as simple as drawing it out with a needle, but the fluid may be in lots of small isolated pockets which would complicate the issue.
His tracheotomy is at noon and then we have been warned that the first few days after surgery will be very difficult as it heals in place. Once it gets sealed in place, it will be easier to provide appropriate pressure to his lungs to support him properly. I can only hope that this procedure will finally be the turning point to get on the road to recovery.
I didn’t take many pictures of Brendan today, just one to share.
Someone must have replaced Trevor’s rice cereal flakes with Folger’s Crystals. He was ultra awake-baby today and refused to nap. He would fall asleep with Gramma rocking him and as soon as she went to set him down, he would pop awake.
