It’s Time for the Dreaded Update

The overdue update is here. I realized everyone is wanting to know details of what happened and what’s going on, and the real question of — what does this mean now? So you can imagine that is why I think I’ve been avoiding this post. Without being boring, here’s a brief overview. 

After four days on antibiotics you would think her double ear infection would be clearing… Reese’s body didn’t like the Omnicef I guess, because she was getting worse and we didn’t even know it. 

“How could you not know she had a fever?!” I know it’s going through your head. Two problems for us — one Reese’s lack of communication skills makes it hard to tell what she is saying when she uses the same mannerisms for everything. Second, she has a high threshold for pain, because of her lack of sense of touch. There have been several times that we didn’t realize she was in pain because she can’t react to it very well. Like if she pinches her finger in a door or drops something on her foot, she hardly responds. Combine the two and you never know when her finger in her ear means pain verses just annoyed by her teething or her stitches. Not that it’s an excuse for the fever, but I didn’t know to look for it because she was doing so well. 

And that’s where we probably made it worse. We had the most amazing Fourth of July with my parents, we were at the Club, outside, it was hot, she was well hydrated and shaded, but still outside. And up late. Very late. And she loved every minute of it. But realizing after the fact she was not well it was probably stressing her system even more. A system that has no ability to fight infection. She is completely without an immune system thanks to her 14 months on steroids. 

I think it was just a perfect storm. She started seizing in the morning and we stayed calm. Heartbroken, but calm. We followed standard protocol and made sure she rested, gave her meds, and waited. Then she had some more and we gave her rescue meds and she rested. When she had more after that, we decided she must still be sick. So after 3 hours of waiting and getting a full work up at the urgent care as an out-of-towner, we determined she still had one infected ear, and luckily the good doctor offered to give her a shot of antibiotics to kill it faster. Unfortunately it wasn’t fast enough. 

We got her to drink some water, take some tylenol and she rested/slept for six hours. But at midnight, she started having her usual pairs of seizures, back to back and then asleep. But when those pairs start to get closer together and she can’t fall asleep it gets more scary. She was also showing some signs of other distress. So when she didn’t respond to the heavy hitter rescue med – in the valum family — (we hate using it), we knew we had to go to the ER.

Rest of the story is not interesting except that it took them two hours to stabilize her. It was horrific. Our worst episode ever. And we felt helpless and so scared. But it’s over and she is better. 

We meet with the doctor next week and we will share what the plans might be after that. Until then, we really can’t say what’s next for us. The most important thing is Reese stays healthy and that nothing stresses her immune system. That is the best way for her to stay seizure free. 

Hope this helps everyone.  

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