0 In Ethan Strong/ Our Brain Injury Journey

#EthanStrong January 8th, 2020 Update

Epilepsy Mom Blog

Clinic days are always draining. I had to keep Ethan awake late, and wake him early so he would be tired and more stressed for his EEG first thing in the morning (it doesn’t take a lot to stress his little brain, to be honest.) he didn’t sleep during it. He wore his little party hat and decided being awake was much cooler. He was content enough tho that they got what they needed and we will know more about that tomorrow during Neuro Clinic.

We also finally got to see Respirology. Basically, we’re supposed to keep doing what we’re doing, as well as add Chest Physio. We’ll be getting a suction machine for him as well, as he’s struggling to clear his own secretions and the big concern is how he would tolerate congestion with his lack of coordination. So suction will help. He reiterated to keep him clear if germs, as he’s incredibly high risk, especially right now given his neurological state. Don’t completely shelter him, but keep him clear of as much as we possibly can. He’ll have follow up with them in a few months to check-in again and see how things are going. Earlier if things decline from a respiratory standpoint.

He also saw the Feeding and Growth Clinic today. I actually called on Monday to see if they’d want to cancel, seeing how his swallow is so poor and oral feeding is at the bottom of our list right now. She still wanted to see him, as she wants to stay up-to-date with his progress so once he IS ready to start that part of his journey, she knows him really well. For now we’re keeping things are they are, with no plans to pull back to a G-Tube come spring. He’ll be keeping the GJ till we are confident he has much better coordination with his swallow and his digestive system is working better

He did have a seizure this evening. He was overtired, over stimulated and overall unsettled. All things which increase his risk of seizure. He stabilized on his own, but is VERY tired now. He’s peacefully sleeping and will hopefully have a good night so his little body can heal, and be ready for tomorrow
#ethanstrong

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