Waylon’s Weekend Update - Crushing it in the CVICU

Big Weekend Waylon Crushes it in the CVICU

TLDR:

Waylon is healthy and hitting his milestones.

Waylon is off his ventilator and his breathing tube is removed.

His chest tubes have also been removed.

Waylon has started a feeding protocol – and have his first real feeding tomorrow morning.

Waylon is a rockstar, but not enough of a rockstar to get to stay on heavy drugs – goodbye

Fentanyl which he will be weaned off of tonight.

We are eagerly anticipating his first poop in a week. Lets go!

The details:

Waylon had a tremendous weekend starting out with the clearance to zip his chest up on Friday. That should be Waylon’s last actual surgical operation during our stay here and the reason we were staying in the modified operating room for the last few days since his open heart surgery. The zip up was a success and they were able to remove all but one of his chest drains at the same time.

The next major step for Waylon was to work on starting to detach some of the dozen plus lines and monitors attached to his body. The first few went yesterday – his umbilical lines were disconnected and the iv connection on his left wrist were removed in small procedures.

Meanwhile, he passed with flying colors follow up brain scans, x-rays and echocardiograms.

Hardly ten minutes goes by without a loud beep, and hardly an hour goes by without something being examined, tested, poked or prodded into Waylon – and this weekend has been very busy as Waylon passes all the preliminary tests to get his license to start being a baby.

Today, the bigger items came off. Waylon has been passing all his breathing stress tests and the ventilator support has gradually come down below his pre surgery settings. This set him up perfectly for one last quick procedure while still receiving oxygen – removing the last chest drains and the connection ports for an emergency pacemaker (that never had to be used, thankfully). These items came out and just a couple short hours later, so did his breathing tube.

As of this writing, Waylon is regaining his vocal cords – so he can cry and yell and let us know just how much all this monitoring, testing and nap interruptions have been bothering him.

Better news for Waylon, he should now be significantly more comfortable without the breathing tube and chest tubes in place. He is able to use a pacifier – which he attacks vigorously. He is allowed to be swaddled as well, which helps him settle down quickly.

Finally, after more than 6 days, Joyce was also able to hold him this evening. This is all “on timeline” but it’s hard not to feel likely he is accelerating at breathtaking speed – especially after the road bump of having to leave his chest open.

Other significant updates from the unit:

We continue to have the best care in the world, and the proficiency and excellence of everybody on this unit has just become routine at this point. It is a joy to watch the team work – their communication is excellent and their willingness to involve Joyce and I in the process has been one of the most comforting parts of this journey. Good news, but a little sad as well, all of this good progress has led us to a position where they likely will end our journey of 1:1 nursing care this evening. The nurses have been our emotional safety blanket as well as Waylon’s lifeline – but we are happy to graduate from 1:1 care!

Finally, we just received word that we will get booted from our operating room home today as well. Back to a standard room – now that our surgical procedures are completed. The standard room will be much smaller, and I will miss the incredible view of Santiago Peak and all the room for activities – but another great indicator of our progress!

Journey ahead for Waylon:

Waylon will be weaned off his heavy drugs overnight. This will be his last of his heavy drug usage until at least 18, when he can make his own life choices. Managing his pain and providing comfort in other ways is now one of our main tasks. We are hoping this will be as smooth of a process as possible for him.

Waylon will likely have his last feeding through his nose tube into his stomach tonight (his second), tomorrow a feeding team will visit early and start working on getting him to swallow and eat on his own. Then they will help to transition his feedings to Joyce – this will be the new huge metric for him and the thing that has the potential to keep us in the hospital the longest.

Joyce’s last update indicated the need for Waylon to pee. He has been peeing up a storm. Now we need him to poop. He hasn’t popped since July 14 th , my mom’s birthday, it would be great to deliver a belated birthday gift to her by having a nice bowel movement. Happy Birthday Gamma!

Since entering the hospital Waylon has been earning his beads of courage. Yesterday the nurses helped us start this colorful representation of his heart journey. Each bead represents a treatment, experience or milestone in his journey - (an overnight stay, scan, or completing a treatment).

https://beadsofcourage.org/?gad_source=1&gad_campaignid=22543013643&gbraid=0AAAAAo4vC-JwLMjmSu8JVSlDuwzsCGzKY&gclid=Cj0KCQjwyvfDBhDYARIsAItzbZHgl2PuS7O6fQ-bZy3zN2bD5Betf_GfntNYNK0mOEnzTapLGS5h5vMaAtGVEALw_wcB

More positive updates to come!

Post Created by Mitch and posted by Joyce mid AM pump sesh.