Saturday, January 30, 2010

Left Eye Not Healing

We go to Dr. Zaidman on Monday and I already know what I am going to hear...

"Her left eye is not healing and she needs the eyelid surgery."

I have to prepare myself to hear that, but I'm hoping for a miracle between now and then.

Friday, January 22, 2010

Pressure is good, for now...

Today we saw Dr. Kane and much to my relief her eye pressure is ok. It was 12 in the Right and 18 in the left. What we are doing now is working and hopefully it will continue to work. I hadn't seen Dr. Kane since the whole scratched cornea incident so he wasn't too thrilled to hear about it. Here we are once again, nothing can just be GOOD. With the good comes the bad....her pressure has been a thorn in our side since she was 6 months old...finally her pressure was under control after a dozen surgeries and countless medications. We can't just enjoy the success of that we turn our focus back onto the health of her corneas. Her left cornea had been doing fantastic and now this...its a disaster.

And I can guarantee that once her cornea is better, her pressure will be a problem again. It's just how it works.

Wednesday, January 20, 2010

Trying to focus on the positive

Emily's visual therapist, Linda, has been coming to the house twice a month since Emily was only a few months old. She has watched her vision grow and improve month after month. Despite the medical roadblocks she has continuously had to navigate, her "usable" vision is fairly good. She walks and runs around like any normal 2 year old. We know she has vision in both eyes because her depth perception is dead on. When she reaches for something she grabs it on the first try, without mis-judging where it is or how far away it is. She plays with toys, looks at books, watches TV (albeit at close range) and goes up and down the stairs unassisted. Since she was about a year old, she has met just about every developmental milestone on target. She was a late walker, at 18 months, but I think that was more of a self confidence issue than physical ability. She cruised for months and would let go all the time, but taking those first few steps was a challenge for her. The day she turned 18 months old, she walked clear across our family room, which is pretty big. For a not quite 2 1/2 year old, her vocabulary is phenomenal. Her therapist, our friends, her doctors and even random strangers have commented on how well she talks. She is clearly advanced in that area, which is wonderful!

Her hearing is excellent, which is typical since if one of your senses is not on par, the other ones are heightened and pick up the slack. She can hear the word cookie or snack from across the house! She is amazingly sensitive to others feelings, often comforting someone she hears crying or knows is upset..."Tyler, don't cry" she said once, and it broke my heart. When we are in the grocery store and she sees or hears a baby..."say hi baby"...."why baby crying?". She is just so sweet.

She is definitely one tough little girl and has taught me so much about how to be strong and resilient. She's my shining star, her smile lights up my day no matter how dark it seems.

I love you punkin pie...

Friday, January 15, 2010

Right Eye Is Better, Left Eye Is Not

When I walked into the doctors office today, I could see that Emily's right eye looked a little better than it had a week ago. I also knew that her left eye wasn't really any better, which bothered me. I had been giving her the medicine and it was pretty clear that it wasn't working very well.

Dr. Zaidman looked at her and suggested that we add the Iquix back into the mix of eye drops to help aid in the healing. He said that he wanted to give her 2 weeks with this combination of meds and see how she does. If her left eye does not heal or look drastically better, he mentioned sending her to see another doctor for possible eyelid surgery. Ugh...the thought of another surgery just makes me sick. His hunch is that she is not closing her eyelid enough during the day or all the way while she is sleeping, and that is causing the dry eye...which in turn is not allowing the scratch to heal. If that's the case she will need surgery to put stitches in her eyelid to help it close better and maintain the moisture. He is also lowered the frequency of the Durezol, the steriod, in the left eye because that could be contributing to the dryness as it is a side effect. Going from 4 times a day to once a day is pretty drastic, especially since the steroid is what is helping to prevent the cornea from rejecting.

Obviously surgery is not an option that I want to consider. She has been through enough. I just hope and pray that the left eye heals within the next 2 weeks. Her appointment is Feb. 1st...

Thursday, January 14, 2010

Scratches on Both Corneas and Infection

Last Wednesday I noticed Emily's right eye seemed to be more bloodshot than it usually is. I mentioned it to Jason and he didn't really notice much of a difference...but I knew something was wrong. Two days later, on a day that Emily already had a scheduled appointment with Dr. Zaidman, she woke up and the second I tried to put drops in her eyes I immediately felt sick to my stomach. Flashback to Oct. 2008 when she had the corneal ulcer and infection in her right eye after she scratched it...It looked exactly the same. Are you kidding me???? What the hell happened????

I got the kids to school (late) and rushed off to Dr. Zaidman's office. I actually got there 45 minutes early because I didn't want to waste any time and thought if he wasn't too backed up he could take us in when he had an opening. WRONG....Do not show up early and expect to be seen even on time...I waited for over 2 hours. Emily ate every single snack I had with me and I was almost ready to go take a walk. It was about 95 degrees in there and I felt like between my nerves and the heat that I was going to pass out. I tried to keep my mind off of how bad her eye looked, but just trying to talk to Jason over the phone and explain what was going on, I started to get upset. How could this happen to her again?? And the worst part was that I saw something wrong with her left eye as well, it literally looks like someone peeled a layer of her cornea off. The right eye was much worse, looking like a crater in the center of her eye. I knew there was an infection...ugh. The part that irritates me the most is that Dr. Zaidman had kept her on the Iquix ever since her last infection like this, she was on it only once a day up until her surgery in November. But Dr. Kane took her off of it a few weeks ago. My gut told me not to stop it, but I was trusting the doctors. I keep thinking that had I not taken her off of that antibiotic, this wouldn't have happened. ALWAYS FOLLOW YOUR GUT! I try to as much as possible, but sometimes you second guess yourself.

I cannot put into words how twisted my insides felt when I looked at her eyes. I felt sick to my stomach with fear and was probably pretty close to having an anxiety attack. Finally when the one resident doctor called her in I was able to explain what I saw and he put drops in her eyes to test for a scratch. Her eyes lit up like a Christmas Tree. Both eyes, stained green in the center...that is not good. When you think of a scratch, most people visualize a thin straight line. When you are talking about a scratched cornea....its more like a scrape. It's not a line, its a large patch of the front of her eye that appears to be missing. It's not pretty to look at, in fact it really made me cringe when I saw it. Once again the stupid residents tried taking her pressure and because they use the stupid tonal pen it never works. Idiots...they have no idea how to work with a child.

Anyway, Dr. Z came in and did not like what he saw. She had been doing so well and now this! He couldn't say for sure that there was an infection, so he took a culture to make sure. But there was definitely scratches on both eyes. JUST GREAT! Hasn't this poor girl been through enough? Why did this happen? How did this happen? There is no answer. She could have rubbed her eyes too much, bumped her eye with a toy, scratched it with her fingernail...etc. We will never know.

So...we treat it as if there was an infection. Antibiotic ointment every 3 hours around the clock...yes we have to wake her up during the night to give it to her. She is no longer on the Durezol in the right eye, apparently he thinks there is no reason for it anymore and we are dropping the dosage in the left eye down to once a day. The weekend was exhausting. I had my cell phone alarm set for every 3 hours to remind us when she was due for it again. By Monday we were out of the ointment and tired as hell. She fared well though, only waking up enough to let us put it in and then going right back to sleep, not once has she given us a hard time. She is just amazing, taking this whole thing so well. But she doesn't know any better.

On Monday I took her back and the results were positive for infection in the right eye but not the left. Her eyes did look better, but Dr. Z wanted to add back in the Iquix so help speed the healing process. We are afraid that the scratch is going to cause damage to her beautifully clear cornea and that would be disastrous. He lowered the frequency of the ointment to every 4 hours, but still around the clock. It's been almost a week and her eyes look better, but not 100% yet. Hopefully I will get better news tomorrow at her next appointment.

As long as the infection stays away, this should not affect her transplant on Feb 25th. She can't afford to wait much longer, I can see she is losing some control over that eye. Which means she is losing vision too. I just hope and pray for everything to heal quickly without any additional complications.

And as for me...I'm handling this pretty well, with the exception of the day it happened. But by all means, pour me another glass of wine.

I will update again after tomorrow.

Pressure Elevated in Left Eye

After a few weeks of no glaucoma meds, sadly Emily is back on the Timolol and Xalatan. Her pressure is up in the left eye. It went from about 18 to 26 in a weeks time. Dr. Kane said it might have something to do with the valve acclimating itself to her eye and that the pressure increase might be temporary. But for now, she's back on the meds.

It was a nice break...the only meds she was on was the antibiotic and steroid. It was the least amount of eye drops she had been on in the last 2 years. But I knew it wouldn't last for long. About 4 days after she started the drops again, her pressure was back down to 18, so at least we know the meds are working.

Her right eye hasn't been tested too much with the instrument, but Dr. Kane feels how hard or soft her eye is to judge the pressure and so far so good. Fingers are crossed that this will be a long term fix for her. I can take giving her the drops, I can't take more surgery. But we know she'll have at least one more...the cornea transplant again in her right eye at the end of February. As long as the pressure remains low...

Squishy Eye

Although Emily hasn't been on any medication for the pressure, Dr. Kane showed me how to press on her right eye and force the fluid to flow through the new channel he created. This will help maintain the lower pressure and possibly prevent scar tissue from forming in the channel. We've dubbed this maneuver "squishy eye" since that's basically what we are doing. I have to press on the lower portion of her right eye for 10 seconds. I am so afraid of pushing too hard, but at the same time I don't want to not push hard enough. When I asked Dr. Kane about it, he said I can press alot harder than I think. That doesn't really help me much!

Emily is ok with us doing it, but she is catching on. If we tell her we need to do "squishy eye" she knows what is happening beforehand. That helps to alleviate some of her crying. We try to make her laugh by counting out loud and being silly while we are doing it, otherwise she'd be freaking out. Sometimes she even tries to count with us, but she only says four and five over and over, its so cute.

It started out as once a day but now we are up to 4 times a day. I don't mind doing it, but it's the amount of force I am using that I am worried about. I don't want to hurt her.

Post Op Follow Ups

In the weeks following her surgery, Emily was seen by Dr. Kane at least twice a week. She was healing nicely and her pressures seemed to be remaining at a safe level. I was holding my breath each time I would take her into the city, just waiting to hear that all is well. Because of the danger of her right eye pressure being too low, she needed to be seen frequently. I have to say that I am thoroughly impressed with Dr. Kane's commitment to his patients. Emily needed to be seen, but he was not going to be in the office for the Thanksgiving weekend. So he invited me up to his house in upstate NY so he could examine her, he even offered to give us lunch! I felt honored and privileged to know that he cared that much about Emily to invite us into his home. The day after Thanksgiving, Emily and I took the 2 hour drive up into NY. His home was tucked away up in the mountains...a far cry from the busy streets of Manhattan. It was well worth the trip to know that her pressures were ok.

What an amazing doctor, I honestly feel like part of his family now. Thank you Dr. Kane for truly caring about Emily, we love you!