Well we're starting our intensive family training for Harrison's trach needs. Before we can be discharged, we all have to be trained on how to care for Harrison's trach and the various tasks such as cleaning the stoma site, swapping the trach itself, hooking up the vent, basic troubleshooting, etc. The training can take 5-6 weeks (we're on track to finish after 5 weeks), but it is intensive...typically three 2-hr classes per week. This is one of the only ways that Harrison is able to receive visitors, so it was sweet to see his reaction to his grandparents after going so long without seeing them...a happy and smiley boy for sure! Since we are doing 3 classes a week, we've now completed a total of 5 classes. So far we've been signed off on Trach Care (cleaning the site and replacing the dressings/ties), Inline Suctioning to help get rid of mucous/thicker secretions, and Cough Assist (a funny looking machine that helps him cough up deeper stuff from the lungs).
Harrison is doing pretty well medically for the most part. He is still doing all the therapies and we're continuing to see more muscle tone return to his body. There is some degree of volitional/intentional movement but it is much less than before his injury. It's really hard to figure out how much is "baseline" (the normal stuff he does) vs. the effects of the spinal cord injury. The therapies are structured so that he's able to participate as much as he can/desires and it can build up from there if necessary. Right now it's mainly focused on correct positioning, discharge needs, and trying to encourage movement with singing, stories, games, etc. We are hopeful that his body will unlock/relax some more, but only time will tell.
The biggest challenge for Harrison at the moment is with this frequent vomiting. He was already routinely gaggy before all this craziness but it is WAY worse now. He started vomiting about 10 days ago and has steadily increased to the point that it is 4-6 times a day of vomit and 8-10 times of gags. The doctors really aren't sure what is causing it and they are trying new strategies. The leading theory is that this stems from motility issues (how fast you process food and move things through your intestines). They are trying to give him medications that stimulate this movement. It's not safe for him to be discharged at the moment because of his high risk of aspiration. There's nothing scarier than holding your kiddo's trach during a "Trach Care" cleaning session when it's all loose and he starts gagging and puking! It's all hands on deck at that point to protect his airway and get all the crud suctioned out before it becomes a problem.
Well, that the news essentially. We're continuing to live up at Seattle Children's and we're figuring out how to make this work somehow. Thank you to everyone who is helping us out right now...it's only because of that support that we're making it. This has been such an emotional roller coaster and your frequent check-in's, random acts of kindness, supply runs, and even hands-on-help have been amazing. We love you all!
-Jonathan & MariClaire
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