As I'm sitting here, the experience is going so smoothly it's almost hard to believe that it's happening. We've been waiting so long. You get accustomed to telling yourself, "Just wait. Just wait." Now, my mind is having trouble transitioning to, "It's happening." It is a blessing though. Just a reminder as you're reading that results won't be immediate but the enzyme starts working immediately. What a relief to her brain! The expectation that we hope to see in the next few months is a reduction of seizures. When we see that, we can start working on weaning off seizure medications little by little. Please pray with us for that. We should be going home around 5ish today.
A whirlwind of activity happened between 10:45 and noon. The doctors met in Joyanna's room, placed the infusion line in the port, discharged us from the hospital and we were sitting in the waiting room of the infusion center by noon. That is without a doubt the fastest we have ever been discharged from the hospital. The nurses and doctors wanted to make it happen so that we could start and finish before 5 pm today. The nurse had it hooked up and going in very little time. Pharmacists, doctors, personnel have stopped by to observe and meet us. We are meeting many for the first time. They are all excited that this is happening. Joyanna watched cartoons for a little while but as nap time was unavoidable (she sleeps whether she wants to or not), she has gone to sleep and is resting comfortably while the medicine is going in very, very, very slowly. It is just about 2 teaspoons infused over 4 hours! That's slow! She has not had any adverse reactions and her vitals are strong! We may just schedule it during nap time every time. It surely makes 4 hours pass quicker for her.
As I'm sitting here, the experience is going so smoothly it's almost hard to believe that it's happening. We've been waiting so long. You get accustomed to telling yourself, "Just wait. Just wait." Now, my mind is having trouble transitioning to, "It's happening." It is a blessing though. Just a reminder as you're reading that results won't be immediate but the enzyme starts working immediately. What a relief to her brain! The expectation that we hope to see in the next few months is a reduction of seizures. When we see that, we can start working on weaning off seizure medications little by little. Please pray with us for that. We should be going home around 5ish today. Comments are closed.
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Philip & Joyanna's Story
December 17, 2009 -
August 25, 2018 Philip's memorial slideshow and funeral service can be viewed by clicking on the "Philip" tab at the top of this page. You can read more about Joyanna's story by clicking on the "Joyanna" tab at the top of this page.
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March 2024
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