Surgery #13

On Aug. 20th, Emily had her 13th surgery, a procedure that took 4 hours to complete. A second Ahmed Glaucoma valve was implanted in her left eye to help reduce her eye pressure. Dr. Kane had planned on placing the valve and drainage tube behind her lens implant, but that required a second procedure called a Vitrectomy. This procedure is done to remove all of the Vitreous fluid (the "gel") that fills the eye. I think I may have mentioned this in a previous post. Dr. Schubert, also an Ophthalmologist at Columbia, assisted Dr. Kane in the surgery and he performed the Vitrectomy.

My alarm went off at 5 am and as soon as I rolled over to turn it off, I felt sick to my stomach. I knew what was happening today and I just didn't want to get up and go. I stayed in bed for another half an hour and just cried. Why did she have to go through all of this in the first place? I couldn't stand to put her through more surgeries, how much more of this can she take? But then it was like a light went off in my head, if she didn't have this surgery, the pressure was going to damage her optic nerve and she would go blind. I had to get past the emotions of the day and just do what our little girl needed me to do, bring her to the doctors who could help her. So I wiped my tears away and got up out of bed...

We had to be at the hospital at 7:30 am as she was scheduled for 9 am, the first patient for Dr. Kane that day. This was wonderful because usually she is later in the day and we end up being there forever. I felt horrible because we had to wake the boys up at 6:00 to get them down to my mother in laws house, but if it meant that we could get to the hospital early and get home at a decent time it was worth it. Jason thought it would be a good idea to give the kids breakfast in the van on the way there, but he forgot that Emily couldn't eat so the poor girl was crying for "Baba" and "faffle" all the way to Grandma's house. It was heartbreaking! Once we dropped the boys off and we were on our way into the city, she calmed down though.

We got there and most of the nurses and staff recognized us, since we had been there so many times before. We had the same pre-op nurse as last time and she even remembered where we lived in NJ. It's nice when people get to know you and realize that you don't need to hear the same song and dance before each surgery...it gets really repetitive after a while. I am going to start carrying a list of all her medications with me and just hand out copies of it to anyone who needs to know. "Is she on any medications?? Yes, here's the list"....just seems so much easier than spouting off everything 3 or 4 times within an hour. OR...now here's a genius idea, READ HER CHART! Seriously...come on people.

Happy Juice -

For the first time ever, they gave Emily the 'happy juice' before we brought her to the OR. I was nervous because I wasn't sure how she was going to handle it, but she did ok. After about 10 minutes she started to get woozy, kind of mellow. She wasn't allowed to walk around so we had to hold her, which was a struggle because all she kept doing was pushing us away and saying 'down'. But once the medicine hit her, she couldn't hold her head up and started babbling silly stuff...she was buzzin for sure! Ha Ha...I never thought I would see a 22 month old drunk!

The medicine helped to calm her down and it actually made going into the OR much easier for her and us. Both Jason and I were able to go with her this time, so we both suited up and off we went. When we walked into the OR, the nurses had me lay her down on the table and she was calm as could be, normally she would have been fighting it but this time she was fine. She cried for a few seconds when they put the mask over her, but she was asleep very quickly. Both Jason and I kissed her and told her we loved her, then we left her in the very capable hands of her doctors.

I kept saying to myself, "lucky #13" as I walked down the hallway. As I turned down that last corner before the waiting room, I completely fell apart. I was trying so hard to hold it together, but I just couldn't. She has been through so much and knowing that there is more ahead of us has just overwhelmed me. I feel like we are running in place, going no where as fast as we can. This is her 13th surgery, and for those of you reading this who don't know, 13 is a very prominent number in our family, it's good luck for us - unlike most who feel it is bad luck. So I have to feel like this would be the surgery that would allow Emily to turn the corner in terms of her condition, the one that would change things for the better. I had hoped that we would never reach #13, but now it looks as though we will well surpass that number of surgeries.

Jason and I got something to eat and went and sat in the "magic garden" in the hospital courtyard. We had never been out there and since it was a nice day we decided to sit out there for a while instead of in the gloomy waiting room. We talked for over an hour, sometimes about Emily and sometimes about other things just to keep our minds off of what was happening. Then finally made our way back upstairs to the 4th floor. I had brought the laptop with me, intending on doing some writing while I was waiting, but I didn't get very far. I had no internet either so I couldn't even post here on the blog. I sat and wrote for about an hour and then had to switch my mindset, so I focused on sketching out how I wanted my son's birthday cake to look. He is having a Mario Kart birthday party and I am taking on the task of re-creating his favorite race scene as his cake. Ironically I used the internet on my phone to look up race scenes on YouTube to remind myself of what it looked like. Now why can't I use my phone to connect my laptop to the internet? I'm sure there is a way, just don't know how. It kept my mind off of things for a while and before I knew it Dr. Kane was calling us back to the recovery room.

He explained that she did well and the surgery was successful. While he was happy with the way the surgery went, he was VERY relieved that it was done. He stressed that her optic nerve didn't look good and it needed the help of this surgery to lower the pressure. I asked what that meant in terms of her vision and he said that "any damage that has been done has obviously left her with usable vision because she can see quite well". Her cornea looked very good and the lens implant was still in it's correct place, all things I had to be thankful for!

But the punch to the gut was that her pressure in her right eye was 24, and under anesthesia it's not accurate, but I guess Dr. Kane didn't like that number. He said he was going to reach out to Dr. Zaidman and ask what his thoughts were, but he felt that she was going to need the same course of action as what we have done for the left eye. This meant possibly another cornea transplant (or partial) and another valve to better control the pressure. That translates into an additional 4 or more surgeries, on top of the two we still have coming up in the next month....can I handle six more surgeries in the next few months????? Honestly I really don't think I can. I know, I know...everyone will tell me to take one at a time, but when you look at the big picture and realize that she will then have had a total of 19 it just seems ridiculous. She's not even 2 years old yet! Can SHE handle another 6 surgeries???

Dr. Kane wanted us to come to his office after we were discharged from the hospital so he could take the patch off. Normally he likes to leave it on overnight, but because he wanted us to continue with the steroid drops for her cornea he wanted to take it off before we went home. I didn't mind so much, but that meant we were still going to get out of the hospital later than we wanted to, still a long day even though she was first in the OR...we didn't leave until after 6pm. We were not to give her anything other than the Iquix and Durezol, and I still had to bring her back the next day.

She slept well that night and I brought her in to see Dr. Kane at 11am the next morning. Her eye looked very good, not too much swelling and no bruising like last time. Her pressure was still low, but he thought it would be beneficial to start the Timolol again. Dr. Schubert was going to see her next week and he could decide then whether or not to resume the Xalatan or Diamox. Because the valve wouldn't be working until the tube was opened in a month or so, she would still need the glaucoma meds in that eye.

We just have to keep doing what we are doing and hope that once the valve is working, that it will finally be the "fix" for the left eye and we can move onto the right. Since last March, her left eye has been the focus of all the doctors, and now that it seems to be doing well...it's time to work on her right (again). But before we can do that, she has to have the stitches removed, which is on Sept. 2nd and then the tube opened in about a month. I am PRAYING that this is it...lucky #13 will be what turns things around for her! It has to...