Good News/Bad News

Good and Bad...Why does it have to be you can't have one without the other? I guess if you have just received bad news some good news would be welcome. But why is it that when you get the good news first, bad news always seems to be right behind it? It's like trying to run on ice, at first it seems possible but once you step onto the ice and get a solid footing, you try to start running and you end up flat on your face. I feel like I have been trying to run on ice for years now. But just when I need to believe that I can run, that I won't slip and fall...reality hits me upside the head and reminds me that I can't. SMACK! What was I thinking???

Good news...

Emily has been on the Diamox (oral glaucoma medicine) for about a week now. At her previous appointment with Dr. Kane, her eye pressure in her left eye was 28. Yesterday she saw Dr. Zaidman and her pressure was 20! Finally, something was working! The Diamox is compounded into a liquid form for Emily since it is only available otherwise in pill form. She's been on it a few times before, but it has never really worked all that well. It was also always hard to determine whether it was that or the eye drops that was bringing her pressure down. This time, it was obvious that the Diamox was the reason.

Dr. Zaidman was happy to hear of the lower pressure and said that her cornea looked really good as well. He doesn't need to see her again until the day of her next EUA in 3 weeks. At that time he will examine her eyes and potentially take out all or some of the stitches from the transplant. He won't be able to determine that until she is in the OR, but that is the plan.

I was so happy when I left his office yesterday, finally some promising news about her eye pressure! We've been struggling with it for so long and to know it has come down to a safer level made me feel like everything we've been doing for her has finally started to pay off. I wanted to call Dr. Kane and let him know that the pressure was lower, not expecting his plan for her surgery to change, but just to keep him updated on how she was doing. I decided to wait until today call him...

Bad News...

I was surprised to get Dr. Kane on the phone, he must have been in between patients. I explained about our appointment with Dr. Zaidman and told him about the lower pressure in her left eye. He sounded very pleased that the Diamox was working. He went on to explain that she still needed the surgery, which I figured. But then he drops this bomb on me..."Her optic nerve doesn't look good"...and to paraphrase the rest 'she needs the surgery now'.

I didn't feel the impact of that statement until I was telling my husband about my conversation. He was shocked, almost paralyzed with fear and I felt it too. We know that the ultimate consequence of long term high eye pressure is damage to the optic nerve which in turn causes vision loss. Was her optic nerve damaged? Is she soon going to lose the vision that she has in that eye? What does it 'doesn't look good' mean?

I could hear the panic in Jason's voice. He told me that he felt like we were losing time, precious time that we might not be able to ever get back. "I feel like I need to come home right now and spend as much time with her as I can, so she'll remember what I look like" is what he said. I immediately knew how he felt, my heart sank and I started to cry. I literally had to take a few deep breaths because I felt sick to my stomach. I decided that I needed to call Dr. Kane back and have him explain to me exactly what he meant by what he said.

I'm glad I did. While the bad news ended up not being so terribly bad as I thought, it was still not good news either. He explained that because of her clouded cornea, he previously was not able to even see her optic nerve so he had no idea what condition it was in. But since she had the transplant and her cornea was now clear, he was able to see that it showed signs that the high eye pressure she's been dealing with for a year and a half was taking it's toll on it. I asked him straight out if she was losing her vision and he said no, not yet. She needs the surgery and the second valve to get the Glaucoma under control so that her optic nerve isn't damaged any further. The damage and vision loss that would result is irreversible. We knew this, we've known this for almost 2 years now. But it was never the forefront of our thoughts and daily lives, until now. Now we are playing beat the clock...do the surgery asap...then wait a month before the tube can be opened and her pressure better controlled. Protect her optic nerve at all costs...

I felt better after I talked to Dr. Kane the second time, but my outlook on things have changed none the less. I don't want to take the vision she has for granted. I really never have, but up until recently we were focused on being thankful for what she can see and not push our expectations too far. Now, I want to show her everything...if she can see fairly well right now, I want her to see things that will leave a lasting impression. She's not even two years old, so I can't expect that she will remember much of this as she gets older. But exposing her to the beauty of our world now, may stay with her for the rest of her life. God forbid she ever does lose her vision, at least I can say that while she could see, she saw amazing things.

In a way, the bad news we heard today seems to have given me a swift kick in the ass. Don't waste time, don't sit around and dwell on the sadness and fear. Instead get up and show Emily our beautiful world, this may be our only chance. The regret I might one day feel will also be irreversible.

So with the good, comes the bad. But sometimes it's the bad that impacts you in a much more profound way. It did just that for me today...

Tomorrow, we will see beautiful things!