Brendan’s issues are much better today, we are pretty sure that it was changes in the medications that sent him on his wild ride. The dopamine helped bring his pressure back up and he started feeling better right away.
After being awake a lot all night, this morning he would just finally start to get settled and ready to get sleep and then someone new would come in to poke, listen to his lungs and generally mess with him. They would stir him up until he was good and mad and then leave him overtired.
The nurse finally cut them off and insisted that he get a few hours rest.
Around 2pm they took him to radiology to get a new PICC line put in. That went well for him, so now they have more reliable IV access and can do the tests and give the meds they need.
He is scheduled for his cath now on Tuesday. We will see if we can make it to Tuesday without that changing again!
Poor Gramma has to go home tomorrow. She had considered delaying her return flight again, but there is just no way to be sure that they really will get to his procedure! I bet Trevor will be looking for her in the kitchen, holding the bottle of baby bath.

Brendan got a rose for Valentine’s day from a set of cute triplets.

Daddy trying to help comfort Brendan

Trevor’s spoiled!!

He still makes it well known how he feels about the end of bath time!

He forgets about being mad about the bath pretty quickly

His hair is starting to show, if you can get past looking at the cheeks!

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.