Another Surgery

It’s been quite a while since I last posted anything. Life has been moving along quite nicely. I don’t know if everyone feels this way, but for us I feel like it’s always two steps forward and one step back.

Life is returning to normal. My leave of absence is over at work, I was offered a job at my girls’ school which I will be starting soon, they will be going back to school full time… Life is good!

Life has a way of keeping you in check and kicking your ass.

Last week Reagan had an eye appointment at UCSD. We didn’t think anything of it because everything has been going well. It was a longer appointment than normal. She had a Visual Field Test done, pictures were taken of her optic nerve, and then just a regular appointment. The news wasn’t great for us at this appointment. Reagan’s eye pressure is creeping up in her right eye.

Her doctor is now suggesting another eye surgery.

She just had an unsuccessful surgery in her right eye back in November.

This news devastated both me and Reagan. We weren’t expecting this. Her eye pressure isn’t out of control, and her doctor isn’t saying this is an emergency surgery, but he would like for it to be done sooner rather than later. He did give me the option to either choose to do surgery now, or we could wait it out another couple of months and see what happens. Perhaps the eye drops will work and it’s just a high(er) pressure day? I asked him how her optic nerve looked, and he told me that while her nerve looks good, there are the beginning signs of nerve damage.

If her eye pressure isn’t controlled, her optic nerve will continue to show signs of damage.

I sat in the doctor’s office with Reagan curled into my lap crying. She told me that this isn’t fair. Why is she the one who is always having to have surgery?

Being a mom is SO SO hard when I am feeling the same way, but I am trying to be positive for her. I allow her to feel the way she is feeling, but I had to remind her that she isn’t ALWAYS having surgery. She did last November, yes, but other than that she can’t really remember the last time it happened.

Times like these is when I really hate how Covid has changed life. Mitch and I go to specialist visits together. We really are a team. Only one parent is allowed in right now, and I am the one that goes with Reagan. When the doctor asked if I wanted to wait it out or have the surgery done, I had to make the decision. Alone. I couldn’t call Mitch and talk to him about it. It was up to me to decide what the right choice is.

I looked at Reagan, who was in tears over hearing the word surgery and had to hope and pray that I was making the right decision when I told her doctor that I wanted the surgery. I was hoping and praying that Reagan wouldn’t be upset with me for choosing that. – Just a few months ago, I assured her that if there was ever the option to NOT have surgery, that’s the choice I would choose – Now I am telling the doctor that we will do surgery.

Right now, I have ZERO faith in my decision skills when it comes to what the right thing is for Reagan. March 2020, I made the decision to forgo getting a 24 hour EEG and to just go ahead to start weaning her off her seizure meds. What a huge mistake that was.

 I still haven’t forgiven myself for that one…

What happens if this surgery doesn’t help? What if her eye pressure is still high? What if this doesn’t allow her to stop some of the eye drops that she is on? What if waiting to see is really what’s best? It’s the “what if’s” that are killing me right now.

Now I sit, and I wait. I am waiting to hear from the scheduling nurse to find out when this surgery will happen.

I would love for the world to just stop turning while this is all going on. Put life on pause until we are through this phase. That’s not how life is though. This is our normal. Life continues to go on and we will have to figure out how to juggle work and life schedules in between surgery and doctor’s appointments.