It was a better day at the hospital today, in that Brendan was looking better. He had been crying less, and seemed to be feeling better. It is still a waiting game to see if his ability to maintain sats improve. His nurse today had given him a bath and changed his ostomy bag so he smelled much better.
We spent all morning hanging out in the recliner and watching “UP”. He looked all around the room and worked on holding his head up. His latest thing is to really scratch on things with his little fingers.
The GI team decided to start him on Erythromycin, not for its antibiotic properties but because it helps to move food through the gut and they think it will help prevent his reflux. But then they also decided to give him his food continuously again, so I am not sure how emptying his gut with meds will help while trickling food in 24×7. I voiced my concerns, we will see how things go tomorrow.
The biggest problem with continuous feed is that it is so slow, Brendan never gets a full tummy. So by noon today, he was acting like he was starving and got pretty fussy.

Lots of the nurses comment about Brendan’s eyes. Not just that they are so big, but that he tracks everything that happens in the room. He watches people carefully. And when he is mad, he makes eye contact and gives you a look that makes you KNOW that you are on his list.

He does get some rest, he really likes his right side

A little bit of calm Brendan time

Trevor was a good boy today. We noticed that seahorse kind of had the same cheeks!

“Hey, that is not my brother!”

Groundhog Day, and just like in the movie – this day felt like one that I have done over and over and over before. Fighting traffic in the morning to get to the hospital in time to be there for the rounds. Spending the morning with Brendan, the evening with Trevor, eat, pump, sleep in some random order and then repeat again.

The good news though is that they are getting it together at the hospital and Brendan looked a lot better today. During rounds, they decided that they were confident that the respiratory issue has nothing to do with his heart defect so they are going to restart the medications that they had suspended. He will stay on the antibiotic and they will wait to see improvement in his lungs. I requested that they go further in to his GI problems and so they brought in a specialist to analyze his situation. The resident called me to take a history and hopefully tomorrow when I get there, they will have a plan for him, at least for testing.

I spent hours holding him today and he had some good peaceful time. He also had some bad meltdowns where his numbers got crazy and he was hard to bring back to calm. They want to wean him on his oxygen, but would end up just turning it right back up during these phases.

At least Brendan was nice and cool today, resting with a new beanie baby named Wrinkles on the tag.

Trevor got spoiled with another long luxurious bubble bath and some photo taking with Gramma.

Repeat again tomorrow, at least the date will change.

I could write a whole book about how emotional and frustrating it is to have an infant in the hospital and all the things that happened this morning, but all along I have tried to focus on the facts and the positives for this blog and I will keep trying. We are stil waiting for more information on Brendan, there is no way to know how long his stay will be or what will be required. His antibiotics are running so hopefully his lungs will get nice and clear and then they can wean him back on the oxygen again.
He had a blow out on his IV in his hand already so they put one in his scalp. His soft little hair had just finally grown back from the last time! They are using Precedex and maybe some Versed to try to keep him calm and comfortable, it really eats at me that he needs to be sedated instead of held for comfort. But I can’t be there around the clock and he has too many appliances attached to hold him right.
I missed the doctors’ rounds this morning, so I will try to be there earlier tomorrow to be able to get a better update. There won’t be too many decisions made until the drugs have had a chance to work.

They piled on tape to try to keep this IV safely in place. Poor Brendan looks like some alien brainsucker is attached.

Trevor is an ongoing source of entertainment and is ready to make me smile as soon as I get home from the hospital.
I needed a Hazmat suit, this baby had a full diaper!!

Making faces at Gramma from his bed

One guess as to what this face means! (The socks are there to keep his head centered because the PT wants us to work on shaping)

Gramma thought he needed a book while he was busy