More Surgery...More Medicine

Emily had an appointment with Dr. Kane in NYC yesterday. I was hoping for good news, but nothing he said surprised me so I was pretty much prepared for it. Her pressure in the left eye is 30, which is up from where it was at 26 last time. I knew it was up because of how her eye looked over the weekend (see my previous post below). This means that the Pilocarpine wasn't working, I figured it wouldn't.

He did an ultrasound on her eye and was able to determine that the valve was in fact still working, so without that her pressure would be much higher. But one valve is not enough to keep up with the amount of fluid her eye produces, so she will need the second valve put in. I expected this because Dr. Kane had been talking about it for months now. She was supposed to have this done back in April but because of the tear in her cornea, he had to address that instead.

This will be a two step process, essentially it's takes two surgeries to complete. She is scheduled for August 20th for the first surgery to implant the valve. At that time she will also have a second procedure done called a Vitrectomy. This procedure is done to remove all of the Vitreous fluid from her eye. The Vitreous fluid is the clear gel that fills the space between the lens and the retina. It has to be completely removed in order for Dr. Kane to place the valve behind her lens implant, otherwise it will clog the drainage tube and the valve won't work. I asked yesterday if there were any negative consequences to removing the fluid and he said No. The fluid is important during the embryonic stage of eye development but really serves little purpose now and she will be fine without it. (That's a relief). I met the doctor who will be assisting Dr. Kane on the surgery and he seemed very nice and said he would take good care of her. I have trust in these doctors like no one else. They have my baby girl's vision and life in their hands and I HAVE to trust them. I have no choice. If I didn't trust them, she wouldn't be having the surgery at all.

Placing the valve and tube behind the lens implant is the best case scenario for her. It will keep it away from the cornea and hopefully won't be a factor in causing her cornea to reject. During the second cornea transplant in June, Dr. Zaidman actually shortened the drainage tube on the first valve because he didn't like how close it was to the cornea, so the further away the better.

The second step of the surgery will be about a month later when she will go back into the OR and Dr. Kane will use a laser to cut the sutures that are holding the drainage tube closed. Once the tube is open and the valve starts to work, her pressure will be immediately lower...and we hope it will stay that way. The only downfall to this is that between now and when she will have the tube opened is almost 2 months, so what do we do in the meantime to lower the pressure? Dr. Kane suggested that she go back on the Diamox (acetazolamide) oral glaucoma medication since we know most of the eye drops are not working. This will help both the left and right eyes since it's an oral medication. The pressure in her right eye was 20 yesterday, which is good, so if it can be lowered even further that would be great.

Another suggestion he had would be for him to irrigate the existing tube while he is implanting the second one, which will allow more fluid to flow through and give her a few weeks of lower pressure. Dr. Zaidman did this during the transplant and we believe that it worked at least temporarily.

We are stopping the Pilocaropine, but adding the Diamox. Other than that all her medications will stay the same. So I now have to either go back to the compounding pharmacy where we've filled that prescription before, or try to find one that is more local. Necessary, but none the less frustrating...

So far we know that Emily has three upcoming surgeries:

• August 20th - Glaucoma Valve Implant
• September 2nd - Removal of the Stitches from the Transplant
• September ? ? - Opening Of The Drainage Tube

We also know that at some point Dr. Zaidman is planning on doing a partial transplant on her right eye. He will only be replacing the top 3 layers of her cornea to remove the scar tissue that formed from the ulcer and infection she had last year. When that will be I don't know, and at this point I really don't need to think about it. Between all the doctors appointments, surgeries, school starting, Tyler's birthday in September and Emily's birthday in October I've got enough on my calendar to keep my head spinning for months.

Each day, I do the best that I can do to keep up with all of life's obstacles. Sometimes I trip and fall, but I always get back up and try again. Today is no different.