Day 91 - Harrison is continuing to heal and strengthen every day. He is now doing up to 3 breaks from the ventilator (we call these HME breaks) and he can do up to 1hr on each break. Sometimes he can do most of the time off the vent just fine and other days it's harder. It will take time for his lungs to strengthen but this is his PT.
He had his Trach Safe procedure a couple weeks ago which confirms how his airway is situated currently in case medical personnel have to respond to an emergency call once we go home. It looks at his anatomy, any obstructions (there were 2!), and verifies his ability to breathe on his own. The study confirmed a few things which are amazing:
(1) his diaphragm works perfectly
(2) his upper airways work at a reduced rate but they work...time will help
(3) he had 2 granulomas around his trach site which were removed to ensure no obstructions were present
The Pulmonologist is hopeful and confident that he'll eventually wean off the vent during the day and only need it at night and when ill.
Harrison's Halo was suddenly removed after he had a really bad day of pain. It took an oxy just to calm him down which is very unlike him. After pushing to speak to the surgeon, she confirmed that the pin sites looked a little concerning and she requested a same day CT scan to evaluate the pin placement. Early the next morning, she came to tell us that the Halo was coming off that day and she was going to add it to her caseload. The procedure took less than 30-minutes to finish and he was immediately relieved of his pain. The rear 4 pins had shifted and were embedded into the back of the skull 3-4 millimeters which is not supposed to happen. The pins are simply supposed to touch and rest on the outside of the skull. He still needs another 2 weeks of close monitoring and has been placed in a fancy c-collar (a bougie Miami J lol). While in there, they shaved his head so he looks like he's 12 haha.
Today he's going to be evaluated by Interventional Radiology (IR) to see about switching his G/J tube from the default loop which requires it to stand out 3-4 inches from the stoma site at a 90 degree angle to a button which allows for a much smaller profile with less fear for it being crushed. This will make transfers and tightening his wheelchair straps/harness easier.
Finally, Speech Therapy is going to try him on some cool Eye Gaze technology to see how he responds to some basic games. The hope is to capture his attention and help him learn to communicate with his eyes. This has AMAZING potential and we're so excited to still be here so that they can try all these different strategies to help him learn how to communicate with us. Being nonverbal makes things really hard and we want him to feel empowered to give us preferences. We've been doing picture cards giving him simple choices between tv shows or even his favorite toys. We'll ask him if he wants to watch Sesame Street or Clifford The Big Red Dog for example, and he looks back and forth between them, showing us his preference for one by stopping on the one he likes and/or smiling.
There's still no discharge day yet...still waiting on in-home nursing. There is a chance we might have a 2nd nurse to take on some of our night coverage needs but he is in high demand and already had a interview with another family. We're not so secretly crossing our fingers that it wasn't a good match! Until then, we're just focusing on Harrison resting, healing, and getting as many therapies as he can on a regular basis before we have to coordinate and travel to them once we're discharged. Traveling with him in a wheelchair, on a ventilator, and using feeding pumps makes it a bit daunting to do a medical appointment. I'm sure we'll eventually learn, but for now it's all a bit overwhelming, and we're loving being able to have the therapists come to us!
We've been prepping his bedroom so the family has been hard at work patching drywall, cleaning decades worth of gunk off the walls, removing wallpaper, painting new colors, and installing shelving in the closets to hold all the medical supplies. The latest adventure is taking out the bunching carpet and building up the subfloor in preparation for his new heavy duty vinyl flooring. This will make it much easier to roll him around and the various pieces of equipment (IV pole, ventilator stand, rolling carts, etc.) with minimal risk of them falling over. When he gets home, we hope to have a whole new place for him to be happy and healthy!
Thanks again to everyone for the continued support and prayers & please keep sending us any leads you have on trach/vent trained RNs or LPNs!
-Jonathan & MariClare
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