And five steps back

I guess after all the progress she's made, we were due some setbacks. I just didn't think we'd get this many and especially all at once.

I got here early this morning for her eye test, to find out she'd already had 6 episodes/attacks since midnight. We'd been averaging 3-4 per day, so I was a bit concerned. The eye appointment went well, she barely fussed at all, despite the doctor saying she would probably scream. I started feeding her, and that's when everything went down hill. Her heart slowed way down, so we stopped the feeding and waited for her to recover. Ten minutes later, we tried again, and the same thing happened. By this time it was pretty obvious that she was not going to take a bottle.
So, the feeding tube went back in. Last time she pulled it out, when it was put back in she screamed and squirmed and it was horrible. This time she barely moved, she was so out of it. We fed her through the tube, but she continued to have breathing and heart issues. Almost constantly.
So, she's back on oxygen. And just like that, the last 2 weeks of progress are wiped away.
I'm a mess... The nurse finally sent me away because I kept alternating between silent crying and hysterical sobbing. I know that its an accumulation of everything going on... Being away from home, not sleeping well, the excitement of everything going well, and then the realization of another month in the hospital.
The doctor said that they're hoping it's just a reaction to the eye drops, so they're giving her until tomorrow to get over these issues before they start her back on the caffeine. If she goes back on the caffeine, it's at least 3 more weeks here, probably more.
I'm so exhausted... I guess I really didn't understand how much of a roller coaster this was going to be. I'm not for a single second doubting that she is supposed to be a part of our family, and maybe that's why we didn't understand what a challenge this would be.
In between her attacks, when I was just holding her and praying for her, she'd open her eyes, look at me, and smile. Almost like she was saying, "it'll be okay, mom." and then the tears would start again.
Please pray for Keragan, that this setback would just be a reaction to the eye drops, and that she would be back to her active self tomorrow. Pray that she would NOT have to go back on the caffeine and that her brain would be able to make her heart beat and her lungs breathe consistently.
Also, pray that I can hold it together for her and be there for her no matter how long it takes for her to get better and come home.