Well the day has arrived and we have "graduated" to the medical unit. The PICU team determined that he was stable enough to go downstairs, so now we're with the Medically Complex Care (MCC) unit. They will help work with the Pulmonology team and his Rehab team to help him grow stronger with his ventilator and recover some function as he heals from the spinal cord trauma. He has moved both legs and his left arm (plus both of his hands have some degree of grip) - so we're encouraged.
Yesterday, we had our Care Conference which brought together his specialists, PICU team, and MCC team all in one room to talk about his road to recovery. We are focusing on getting a G-J tube for stable feedings (it'll send formula into the small intestine bypassing the stomach, since he has extremely delayed emptying, which causes LOTS of issues), some dental work due to him grinding his teeth and dealing with the effects of frequent vomiting on his enamel, supportive rehab therapies (Music, Speech, PT, and OT), and trach care trainings for us and the grandparents. We also started a new bedtime routine, with Mama & Dada both getting a chance to hold him, sing him lullabies, read books, and rock him to sleep. We had all been missing our cuddles, and even though it's more difficult in the Halo, it's worth every bit of effort when you're looking in those little sparkling eyes & seeing how happy he is to just gaze right back. :'-)
We have a clear-ish road to discharge but it will still be quite awhile...we're looking at 6-8 weeks minimum, but we're hopeful that it might be slightly less since he seems to be recovering better than expected. We are heartened that his surgeons have both commented that according to the location of his injury, he shouldn't be able to do the things he is doing. They were both very reserved about his chances for recovery after the C1/C2 injury, yet they were quick to get excited and point out that he was gripping his fingers and moving his legs. Those inconsequential milestones (to us) are actually grounds for BIG excitement by the specialists. We had one of his surgeons swing by today for a final check up on his Halo and she remarked that Harrison was their one positive case for the month. It was a sobering statement, yet gave us a lot of relief.
It's been a journey for sure...we started this thinking we'd go to Mary Bridge to get IV fluids, maybe some Zofran for his nausea, and then a consult on his reflux. Little did we know we'd be embarking on spinal surgery and a tracheostomy. Life looks very different for us now, but we're just so very grateful to still have Harrison and to his smiles in our lives. We've settled into a routine and have amazing support. We're getting out and doing exercise, helping his nurses/therapists better understand how to help Harrison, and taking moments to just reflect on our new pregnancy and how very blessed we truly are.
Love to you all!
Jonathan & MariClaire
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