Allergic Reaction To New Eye Drops

Before we left for vacation, I got a phone call from Dr. Zaidman’s office saying that he wanted her to start a new eye drop for the Glaucoma, something called Phospholine Iodide. Lets just say we went to the ends of the earth to find this medicine and even had it shipped overnight from the pharmacy at home to where we were staying at the shore. Today is the third day she’s been using it and I recognized the signs almost right away… she was having an allergic reaction to it. Her eyes are slightly bloodshot, her eyelids are red and puffy, she has been unhappy for most of the past 3 days and the only time she really is not crying or cranky is when she is sleeping. She slept all of Tuesday afternoon and then was up two or three times in the middle of the night crying. Yesterday she took a morning nap and fell asleep at the beach for at least an hour or more. That is just not like her.

This is exactly how she acted when she had that reaction to the ointment we had mixed up at the compounding pharmacy last year sometime. I finally called Dr. Zaidman and Dr. Kane this afternoon and they both agreed that we should stop giving her the drops. All the shit we went through to get that stupid medicine and she’s allergic to it???? It figures. But now the reality of her needing the surgery for the second valve is at the forefront of my mind again. Not that it ever really left, but at least for a little while I wasn’t really thinking about it as much.

We started this fight a year ago…we were on vacation anticipating that Emily would need surgery to implant a valve in her eyes to control her eye pressure. Six surgeries and 2 EUA’s later, the Glaucoma is still winning. It took her vision once already by causing the rejection of her first cornea transplant in her left eye. Now that she has had a second transplant and a new chance to see, we hope that we can finally find the right combination of treatments for her and once and for all get her pressure lowered and keep it there. Here we are one year later, again on vacation trying to enjoy time together as a family. Instead of being able to shut out all of what is happening to us/her, I have spent most of my vacation agonizing over yet another 3 surgeries she will need to have in the coming months. By the time she is 2 years old, she will have had 15 major surgeries. I just can’t seem to get that number out of my head.