Day 110
Well our first big holiday as come and gone. It was different but everything is different with COVID. We had all these plans to decorate our house and coordinate with neighbors for trick-or-treating but such is life. We still celebrated the holiday and dressed up and walked the halls of the unit handing out candy to nurses, therapists, residents, HUCs, etc. We had fun and more importantly Harrison did amazing on his ventilator break and in his wheelchair.
We have been working with Speech Therapy and Occupational Therapy to get Harrison started on eye gaze technology. Right now it's focused on simple games to solidify that cause and effect element that is so core to the technology. The therapists are super encouraged by what they are seeing and we're excited at the potential.
Harrison's experimental medication from Europe finally arrived. His previous medication had run out/expired and we were fortunate enough to figure out how to get it for continuity. One huge blessing is that the pharmaceutical company is pursuing FDA approval and can't charge for the medication. instead of it cost us ~$1500 per month it is now free. I am hoping that they have a SLOW approval process haha. We're so grateful to his geneticist (Dr. Yuen) and pharmacy manager at Mary Bridge Hospital who helped arrange the paperwork, tracked it through customs, and hand delivered it to us.
Harrison is essentially medically stable and ready for discharge. He is continuing to make strides off the vent and recently started on a Passy Muir Valve (The Speaking Valve) which is pretty rare for trach/vent kiddos. His lungs and upper airways are strong enough to start using this. It allows him to go on ventilator break and talk if he wants. It was super cute and made his vocalizing sound like a trumpet haha. It makes the lungs work much harder than his standard HME breaks so they are starting him on lower stretches. He is now doing up to x3 HME breaks for 60-90 minutes each and x2 PMV breaks for 5-10 min each. He get's pretty tired after these sessions and usually passes out shortly afterward exhausted.
His vomiting is under control and we have it averaging 1-2 per day which is remarkable. The trick was really getting the intestinal feeds along with erythromycin to help with motility and scheduled morning suppositories. He's gained nearly 8lbs since our admission in July and is looking so much healthier.
Our discharge planner is working tirelessly trying to find us home nursing. We cannot discharge until we have nursing support because of his trach status. So far we have 2 nurses locked down for M-F day shift (8-hrs) and M-TH night shift (10-hrs). We still need a 3rd nurse to do Fri-Sun night shift (10-12 hrs). If you know of anyone interested, please reach out to us and we'll put them in contact with our planner.
We have been hard at work getting the house ready for discharge. With the help of family, we were able to get his bedroom stripped, sanitized, patched, painted, and new flooring and closet shelving put in. We're trying to make it as functional as possible but with soul. There will be a lot of medical supplies that need to be stored/organized and all of his cares need to be easy to do so extra consideration is being given to space and utility.
In terms of immediate needs, we are starting to get low with our gift cards. It's not an emergency yet by any stretch but we're trying to be judicious with them. If you were wanting to send a new wave of Uber/Grub Hub/Seattle Children's Cafeteria gift cards, that would be appreciated but it is not necessary yet. We've been so blessed and grateful to all of the support we've received...we haven't had to spend much on food which has been amazing and allowed us to reallocate funds towards home modifications, vehicle modifications (regular car batteries and wheelchair vans don't mix), and emergency preparedness (a generator solution is very important for vent kiddos!)
We hope to be out of here soon...here's hoping for being home for Thanksgiving.
Much love,
Jonathan & MariClaire
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