Well our pre-planned overnight stay was a whopping success. Everything went right...a HUGE shout out to our coordinator Serena, who helped orchestrate 3 departments doing multiple procedures, all requiring anesthesia...orchiopexy & circumcision, Re-Trach Safe, and an updated brain MRI. The urinary surgeries were minor and healed quickly. We had to chase a small infection for a few days but it was nothing our nursing team couldn't handle. The Trach Safe revealed a partially obstructing granuloma that was removed (pretty common since we're talking about scar tissue from his tracheostomy) and showed that he is strong enough to be bagged from above if ever in an emergency (yay!). The last brain MRI he had done was at 13 months old & had decreased myelination - the new one showed continued growth & development with his myelination having advanced to approximately a 22 month level. While the scan was normal for kiddos with his syndrome, we are hopeful that the continued development shown is due to a mixture of his experimental medication (Triac/Emcitate), plus all of the therapies & maximized nutrition he's been getting. We plan to have a meeting with his Endocrinologist & Geneticist to discuss the findings further, but we're initially encouraged.
Due to his airway status, we planned to stay overnight back in our "home away from home", FA.3, with the amazing team of nurses, therapists, even our favorite housekeeping gal. It was like a giant reunion filled with smiles, jokes, updates, and tons of "Awww!" for Harrison's little sister Hattie. They loved seeing the progress Harrison is making in his volitional movements and encouraged us to stay strong, that we are making a difference in his recovery. Sometimes living in the day-to-day it's hard to see the progress being made. Connecting with our extended medical family was so special and they took such good care of us all to ensure everyone had the best night possible (keeping in mind that we were in a hospital after all haha). There was some definite pain issues for little man, but he smiled that big toothy smile he does for people he loves, nurse after nurse, therapist after therapist. It really was something to see that he remembered everyone and instantly reconnected with those special folks. :'-)
The next morning was low stress - everyone agreed that Harrison was managing his pain well and his post-op sites looked good for discharge. We had to wait for a while for the final discharge orders, but it was fortuitous that it took as long as it did... During a visit from his Kaiser pediatric hospitalist, Dr. May, his Speech Therapist, Rachel, stopped by as well, and the two of them were able to brainstorm some strategies to combat the stupid denial for Harrison's eye gaze technology so we can get it set up for home use. It's our hope that this will get resolved quickly, but I have a sneaky suspicion that we're on the right page now that a Kaiser doc is involved.
Going into it we had some peace but were understandably nervous. We did the whole, "Quick - let's make memories," flurry of activities prior to the surgery, just in case...because that's the world we live in. We took Harrison on a beautiful off-road walk through Fort Steilacoom Park a couple nights before to walk around the renovated Waughop Lake trail. The next night, we went to the Tacoma Rainiers to enjoy our first live event since this COVID madness started. It was nice and helped remind us that living with Harrison's complications doesn't mean that we're done with adventures...they just look a little different now.
All in all, it was a perfect visit...a tune up if you will. It's always better to plan these situations. We're fortunate that he's stable enough to allow that. Thank you to everyone who helped support us while we were gone overnight, prayers, and helping us out with meals as he continued to recover from his surgery. It took about 3-4 days to heal enough to not need pain meds and about a week to resolve his minor infection. He's doing good and we're doing good. Until next time Seattle Children's and FA.3! Here's hoping it'll be a while... ;) We love you all! <3
- Jonathan
Comments