Saturday, May 10, 2014

Post-Fontan Day 2

Today is Saturday (right?) and it's been a very lovely day for Chase! He's made some significant progress on his road to recovery! By around 24 hours post-op, he had already lost the breathing tube, the OG tube, his femoral arterial line, his rectal temp probe, and dropped from 9 med pumps to 4. That's amazing!!

He still needs some oxygen support with the nasal cannula at 2 liters, and still has his central venous line, 3 chest tubes, a line directly to his heart to measure pressure, and a Foley catheter. This is AMAZING progress!!!!!

The biggest question for post-Fontan patients is drainage. His chest tubes have had the typical volume of output at this stage, and if anything, it's been slightly less than expected, rather than more. This is excellent news!! The volume of chest tube output is the main factor in how long we'll be staying, and so far things look encouraging. But it's too soon to get our hopes up as it could increase once he picks up his food intake. Please pray with us that he doesn't have unusually large volumes of output!

He's was playing on the iPad while watching a movie, but is resting a bit now. He's on a pain med schedule to keep him comfy with additional doses of Tylenol and Oxycodone as needed. Overall his spirits are high (all things considered) and he's been a real champ!

Our plan for tonight is to continue to let things ride as they are. They're weaning him off the pumps and will most likely have him ready for the floor by Monday, I'd guess. Not much happens in the ICU over the weekend, especially when his surgeon isn't here to make the big decisions in his care. But tomorrow we'll probably lose the catheter and then either tomorrow or Monday, he should lose the heart pressure line and central venous line (these calls are all deferred to his surgeon). He'll be left with 3 chest tubes and most likely keep a bit of O2, and that's how I'd imagine he'll look when we head up to the step-down unit on 8D. I'd honestly be surprised if they kept us in the ICU beyond Monday with how well he's progressing, assuming a room is available to send us to on the floor.

Thank you as always for your continued thoughts, prayers and well-wishes for our boy! He is truly rocking the Fontan! God is so very good!

A few pics from our day...












































First Post-Fontan Night

((Sorry if this post is ramble-y... I've been up for over 26 hours straight...))

Our first night post-Fontan was a quiet one... exactly what you want after a major heart surgery! Chase slept very well with the help of his sedation and pain meds. It's a tricky balance to keep all of the numbers (heart rate, blood pressure, oxygen saturation, etc.) happy, but his team has been dedicated to him since he arrived from the OR and have kept him very comfortable. That makes this process much easier for me! He was having some issues keeping his heart rate up, so they decided to use the pacing wires that were temporarily placed during surgery to "dial in" his heart rate exactly where they wanted it (99).

They slowly weaned his ventilator support and were ready for a CPAP trial at 3:30 AM. This is when they let him breathe solely on his own to ensure he is able to support himself before removing the tube. His blood gasses all looked wonderful and he was slowly weaning off his sedation drips, which meant he began getting agitated with the tube. It's heartbreaking to see his tears and to watch him try to cry, but no sound comes out. :( The nurse and respiratory tech agreed he was ready, but they needed the doctor to sign off on it first and give the verbal go-ahead. Two pages and 45 minutes later, she finally arrived and agreed! Whew!

Chase was a champ for the removal! They had a bunch of tape on his face to take off (which went waaaay better than I expected), and pulled the tube quickly and without any issues. He also had an orogastric (OG) tube that went from his mouth to his stomach that was removed at the same time. So by around 5:00 AM, he was down two tubes and gained a nasal cannula of 3 liters of oxygen. By about 5:30 AM, they moved him down to 2 liters with sats at a very comfortable 90.

The plan is to keep him comfy and let him rest until rounds in the morning, around 8AM. He may have other plans, though. Literally about 20 minutes after the tube was out he was asking to play on my iPhone!! Haha! I told him if he would rest until 6:00 AM, that maybe he could play with my iPhone then. So far, so good!

Before & After extibation.


It's now about 6:15 AM and he's still resting peacefully. I'm sure he'll remind me about the iPhone as soon as he wakes up again!

Holding steady!



Thanks for checking on our boy! We appreciate the love, support and prayers!