Our little guy turned 4 yesterday! It’s been a crazy year for sure. MariClaire and I couldn’t help but reflect on all the moments and experiences we’ve all been through this past year from our amazing trip to Hawaii celebrating his 3rd birthday, starting pre-school, getting that FDA waiver for his experimental medication, dealing with COVID, medical challenges, using respite for the first time, and finding out that Harrison is going to be a big brother. The hospital supported us in a BIG way with his birthday and went out of their way to pick up some gifts special to Harrison, made a giant poster/card with Clifford the Big Red Dog on it signed by all his nurses, therapists, and docs, and moved therapies to another day so he could just relax. We had a big Zoom videoconferencing call with family and friends and Harrison enjoyed that immensely. He was smiling so much yesterday. That’s really as good as it gets. Thank you to everyone in our tribe that has been there with us as we’ve laughed, cried, been frustrated, been excited, etc. Being a special needs parent really takes a village and we’re so grateful for all of you near and far!
Harrison had his final (cross your fingers) surgery of this stay. He had some infected teeth and they ended up removing them. His reflux and gastroparesis were out of control for well over a year and it beat the heck out of his teeth. Thankfully it was just a few that were too far gone. The surgery took about 90 min but he spent 2+ hours in PACU (recovery) snoozing the day away. His pain was minimal, and we think he feels MUCH better since those teeth were almost certainly hurting him. If you can believe it, his smile is even cuter now.
We’ve started our Trach training with family. In order for us to be discharged, Harrison has to be stable (he’s mostly there but still has a little bit to go), we have to be trained, and we have to have in-home nursing arranged. We’ve been here for 41 days now and we still have about one month left that will focus on continued training and building our in-home nursing team. All of September will be spent doing 2hr trainings on Tuesdays, Wednesdays, and Fridays. So far we’ve gone over in-line suctioning and trach care (replacing the trach ties, cleaning his stoma/skin, etc.). It’s challenging but doable. The nursing agency confirmed that they have locked down 2 nurses for M-F day/night shift after a series of interviews between them and us. We are excited to get to know them and explore what life will be like with in-home nursing care. It’s looking like we’ll be going home at the end of September or in the first week of October if everything stays on track.
Thank you to everyone who reached out to help celebrate Harrison’s special day. He isn’t able to play with many toys because of his syndrome so we’ve been encouraging people who still feel the need to pick up something for him to consider donating to the AHDS/MCT8 Foundation instead. Their website is https://mct8.info/ and it helps educate the world on his syndrome and help support families in need of therapies or adaptive equipment that they wouldn’t otherwise be able to afford.
We love you all!
Jonathan & MariClaire
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