Well, after over a week of not seeing our happy boy smile, he smiled at both of us this afternoon! It really melted our hearts and made all of the nurses/therapists/doctors squeal with "awwwww's" when we showed them the photos. :D
Harrison was more alert even right after the trach surgery than we had expected and has needed significantly less pain medicine as well, which is really surprising. He's such an amazing little guy & is teaching us so much about strength, endurance, and even having a good attitude during hard times. He's had more phlegm today & needs help with suctioning it out every once in awhile, but overall is just such a trooper.
The area in his right lung that had issues is starting to reinflate naturally so we're making progress there. His chest x-ray showed a ton of improvement but there's still a bit of atelectasis in the upper lobe which is harder to relieve because of his c-collar. His oxygen sats have been steady which is reassuring. His night was uneventful and we all got good sleep for the first time in a while.
The day was spent healing and getting used to food again. They introduced Pedialyte yesterday and have been incrementally increasing it along with formula so that it doesn't overwhelm his system, since he went so long without food. He is getting stronger and the trach is healing well, which means he will be in a much better place for the big surgery next week.
Physical therapy visited today and we were able to focus on planning for his needs next week after his surgery. We went through all of his equipment at home and the PT was happy to see we had most of what he'll need in order to be discharged.
Finally, we had a chance to meet the second surgeon who will be doing the Halo neck brace. She seemed very knowledgeable and took the time to answer all of our questions. The surgery will be focused on three things...(1) lesion biopsy of the C2 which will require some delicate maneuvering, (2) fusion of C1 & C2 with a metal plate, rods, & screws and (3) installation of the Halo neck brace with a supporting vest that will sit on his chest. Since he is so young, his bones are soft/spongy and the Halo will help ensure the fusion is well supported. They will leave the Halo in place for 3-6 months and Jonathan is already planning an epic Halloween costume for Harrison.
We love you all and are so amazed/humbled/overwhelmed by all of the support we've received. Our community is truly special and we accept the love with open arms. COVID has made visits impossible by family, but we've never felt alone due to the numerous texts, calls, and outpouring of generosity that's been flooding our room this week. Words can't express our gratitude, but just know it means so much to us both.
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