I have struggled to keep my eyes open for much of today.

Brendan had a busy day, starting with completely pulling out his feeding tube. Then he blew out the base of his ostomy bag and it all needed to be replaced. He has been getting analyzed for his opiate dependance and is starting methadone again with a weaning protocol.
His entourage is ever expanding, now he has added an ENT specialist to his team. They are going to be working with the GI team to figure out what kind of help Brendan will need to be able to start eating properly so that they can get rid of the feeding tube. Hopefully it will not require more surgery, but it is good that they are finally looking to the future and thinking about his long term recovery when it comes to nutrition and growth.

I like his little glow in the dark toes sticking out

I think he was checking to see if the coast was clear for making his blanket escape

Trevor met Aunt Beth and Uncle Steve today but was Mr.Crankypants about it. He was overtired I think, as soon as they left, he was out cold. He will get to see them again this weekend and they can get to know ultimate cute Trevor.

Grandpa Jack had surgery today to have a new pacemaker put in. He is in recovery and is doing well so far. We hope that he can get out of the hospital soon! The less family members in the hospital the better!!

Brendan slept a lot this morning, and when he is comfortable, he is very “hands off”!!

Today he went for another upper GI study in radiology. This time they were looking for something called a tracheoesophageal fistula. Because his stomach and ostomy bag filled with air so quickly when he in intubated, they worried that there might be this condition where the trachea and the esophagus had a connection that allowed air in to the stomach and fluids in to the lungs.
The test was negative – no signs of this problem were found, but at least they can rule it out. We had been told that the air in his bag was from him swallowing it while crying since the cannula is blowing air in at high pressure. This just confirms it is that simple and it isn’t something more serious.

We did get a tentative surgery date today – March 12th. Gramma is officially booked to fly back on March 5th so that she can help us out and spoil Trevor some more.

Trevor had another busy day. He had to go to the office today and help me with some paperwork. Poor kid had to cope with “Oooohh, the cheeeeEEEEKSSSS!!!!!” for a while but he handled it very well. He was a real charmer and when he had enough, he let me know it.

When we got home, he got his bubble bath. This is a picture of Trevor still covered in bubbles after his bath came to a sudden stop. I promised Trevor that we would not talk about why he had to be removed from the bath suddenly.

Trevor is going to help with “Rocky Training”. It starts with a Stallone impression and 100 knuckle pushups!!

I just trimmed his fingernails today and must have missed a sharp corner. Just as the other little scratch was healing, he gave himself a fresh new one.

Every day brings space time. I think he knows that kicking the pole makes the toys move.

We wait nervously for information on days like today, and it seemed to take forever to see anyone on the floor. Their conference must have gone long, and then they waited forever to do rounds on Brendan.

To get to the meat of it, the final decision among the surgeons and specialists is that Brendan is ready for his Glenn in every way except for his lungs.
They don’t like the alternative plans for him, so what they decided to do was to go ahead and schedule the Glenn procedure for approx 2 weeks from now. In these weeks, they are going to give him the “Rocky Training” lung treatment. They are going to hit him with everything they can think of to help his lungs get stronger and healthier and clearer so he has the best chance of adjusting to the new circulation pattern in his system.
If in two weeks, his lung condition has deteriorated, or they feel like in some way he is less stable, they will cancel the surgery and go with one of the other options that involve lots of waiting and growing and time.
There are still a lot of questions that need answering and we will be meeting with all of the doctors to get more information and make sure that before they wheel him to the OR, that we are fully prepared for his recovery process. We should have an official surgery date in the next few days.

He did have a great night last night, mostly because he had a very good nurse. It makes a huge difference. She let him sleep as much as possible and he had about 25 minutes of happy-baby time this morning, even if he was feeling kind of high from a recent dose of drugs.

He fell asleep watching his mobile

Trevor was back to being happy baby most of the day. He spent the morning helping Daddy work from home.

Serious camera face

Per the request of cousin Kayla, I bought a bag of super crunchy kettle chips. If you can’t stand the sound of someone crunching, don’t watch this video, or at least turn the sound off! Trevor was a bit distracted by the camera, but he still thought eating was pretty funny!