Post-Fontan Day 4

Well we didn't quite get the news we were hoping for this morning during rounds. His surgeon wanted his CVP (central venous pressure) set up again (it wasn't working over the night and the nurse had left it alone), and he also wanted to increase his Milrinone (heart med), so the central line most definitely would be staying in.

Dr. B also ordered an echo to check for fluid as his x-ray was hazy and indicated a strip of fluid in his lung that wasn't draining. This meant stripping the tubes, which is very painful. The nurse gave him some morphine and versed before stripping the tubes and she was able to get a good bit of fluid off.

His drainage seemed to slow throughout the day today, so I'm hopeful that his chest x-ray tonight will look clearer. His nurse thinks perhaps he'll be ready for the floor tomorrow, but I'm not holding my breath. Slow and steady is the name of the game around here.

The hardest part of today has been Chase's discomfort. He's off all sedation meds and the anesthesia from his surgery is all out of his system. He's only taking Tylenol for pain (and an occasional hit of morphine) and cannot have Oxycodone since he's still refusing to eat. Today he has been very sad and discouraged. He's more like himself, which means he really doesn't want to be here and has said so several times. He's fighting the food and fluids and today had also started fighting the sleep. He's so exhausted but is also miserable being stuck in the hospital, and it's just a tough situation all around. It really breaks my heart to see him like this -- so discouraged and not interested in anything. I brought LO up this afternoon and seeing her didn't even really lift his spirits. He received some mail that I brought up for him today as well, and he did smile a tiny bit but was still just mostly uninterested and sad. I've posted all of his cards on the wall by his bed so he can see them and be encouraged throughout the day. I just know he's gonna get there -- just maybe not as soon as I'd like.

We decided to give him some Ativan to help settle him down enough to rest. Hopefully it dies the job!

My prayer for him is that he'll get comfortable enough to get some solid sleep tonight, that his fluid will continue to decrease and his spirits will lift somehow. It hurts so much to see your child like this and be powerless to do anything to help. Please pray he turns a corner tonight!!!

We were told earlier that he'd have his awesome nurse from last night again tonight, but they just said she was pulled to the PICU and we'll have a "floater" who isn't an actual PCICU nurse, so that's a bit unsettling for us. Please pray she's on top of her game and helps us get Chase to have a restful night.