Gabriel has officially past the year mark without a seizure! YIPPEE! What a year it is has been! We have learned that stopping the seizures has not stopped the side effects and other issues that Doose causes. However it is a HUGE milestone to be celebrated!
The year date came and went without much fanfare because he was so sick with RSV and then pneumonia. We spent a full week in the hospital. There were some stressful and scary moments, like a sudden 105 fever spike that seemed to come out of nowhere or oxygen levels plumanating when the oxygen mask was removed for an x-ray. However, in general this hospital stay was not bad. Unlike our other visits, the medical teams deal with RSV/pneumonia type things all the time. We knew what was wrong and how it should progress. We weren’t having the follow the ketogenic diet. AND we had TONS of help! Thank you everyone who brought us meals, did our laundry, visited us, sent balloons, etc. etc. I am not exaggerating when I say we would be lost without you!
We have been home from the hospital for almost 2 weeks. The first week Gabriel did great! He played and played and played some more! He talked non stop and soaked up all the attention. We had good follow up visits with Occupational Therapists to check on his swallowing and with our family doctor.
The next steps are going to include working with something called an Aerio Digestive Team (I am sure that is spelled wrong) , and a Pulmonlogist to resolve his oxygen levels. The ideal number is 100 and he walks around in the low 90’s and dips into the mid 80’s during sleep (translation-not enough air-not good). At least that is where he was when he was healthy before this last bout of pneumonia and the hospital stay.
After the great EEG results we are getting to wean another one of his medications (Onfi- for the epilepsy families following this)! YIPPEE! The goal is to only have him on the medications that he needs. The less medications, the less side effects, the easier on the brain.
The weans themselves can be tough. We have been very lucky that so far, that we have not seen side effects when weaning medication. This last week was tough though. We don’t know if it was medication wean, or the wean in combination with heading back into the school schedule (after 3 weeks off due to illness and spring break). But he has been needing naps again, he has been very emotional (out of character) and has had dry heaves in the middle of the night. All are possible side effects of weaning but also all things that can be attributed to a full week back at school.
We are hoping our happy playing, chatty boy comes back soon. So many ups and downs. One good thing about our ups and downs is that we have learned to really appreciate the ups! 😉
Thanks for your prayers and support as we continue to fight for our boy 🙂