I am not even sure I can go over all of the information from the hospital today, it is all in a constant state of change. It is very likely that now they will decide to go ahead with the heart catheterization after all, we are waiting for them to put him back on the schedule. The different cardiologists don’t agree on the best course of action and doing the cath is the only way to get the real information needed to make the right decision. Right now, they can only speculate.
Medication changes seem to have totally backfired and they have sent poor Brendan seesawing from one extreme to another. They brought his heart rate and blood pressure down too low and now are having to administer dopamine and IV fluids to balance him back out. He hasn’t had a single wet diaper today despite increased Lasix so they’ve done another ultrasound and inserted a Foley catheter to get urine for some testing.
He is getting a new IV put in again and now they can’t give him anything for sedation so he is awake and upset.
Brendan has a long difficult night ahead of him, we only hope that tomorrow brings some answers.

This morning he was still riding the ativan waves and was sound asleep most of the time that I was there.

His bed was littered with empty sucrose bottles, he loves his sugar drops on his pacifier.

Trevor spent the day looking cute in his Valentine outfit.

He got a Valentine from Gramma

He was circled by monkeys

He thinks monkeys are silly

His hat is too big

Brendan had a thorough ultrasound on his entire lower abdomen today and it found nothing abnormal. Kidneys, liver, spleen, gallbladder, bladder, bile ducts, stomach, intestines…everything they could look at looked healthy and normal.
He was pretty well doped on Ativan today so it was difficult to tell if he was feeling better or not. They are going to switch him from that to a Clonadine patch. Hopefully it will help his blood flow, heart rate and make him feel a little more relaxed at the same time.
We are still waiting on the cardiology team to make him a new plan for his surgery.

Bill and I gave him a thorough sponge bath today and changed his leaky ostomy bag and for a short time, he was feeling pretty good.

Trevor helped Gramma sort through the room full of baby clothes and make a giant pile of things that don’t fit. Now his drawers actually are organized! They cooked a great dinner too!
And on top of it all, he is as cute as can be.

When Bill and I got to the hospital today, Brendan was already pretty heavily sedated and sound asleep. He is getting rest while the doctors try to figure out the next steps. Tomorrow morning, the whole huge team will get their heads together and make a plan.
I am going to carpool with Bill early tomorrow. He will drop me off on his way to the office at 6am and I will spend the day with Brendan while Gramma is still here to be with Trevor.

Even Ativan is not enough to stop those wire pulling fingers!! Since Brendan will be in the hospital for a while, they put an IV back in his scalp. That is the 4th scalp IV placement and the 6th IV overall in less than 2 weeks.

Trevor’s day involved more luxurious bubble baths and smothering from Gramma.

Obviously today’s bath was also too short for Trevor. He wasn’t ready to get out!

If only you could smell how fresh and clean he was.

This is the first and last time that Trevor will wear these adorable jammies. They have plenty of room except for his little toes are crammed in to the little footies because his legs are too long. It is a real shame, we love these on him!