Wednesday, August 26, 2009
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...
Wednesday, August 12, 2009
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...
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!
Tuesday, August 4, 2009
This is a news story that ran on Verizon FIOS News and RNN about Emily in July/Aug 2009! Spreading the word about Emily's condition and her struggle is just one more way to reach others who may be struggling in the same way...please feel free to share this with friends and family.
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.
Sunday, August 2, 2009
Sometimes when people ask if her eye is bigger, I know they are referring to her left eye looking larger than the right because the area where the graft is, is much larger. Typically children with glaucoma do have eyes that are larger than normal and even one that is smaller than the other. So far I think Emily has maintained a relatively normal size eye, with the exception of before the second transplant in her left eye when her pressure was high. At that point she had (for lack of a better word) areas that would 'bubble' out, those were the weak areas at the top of her cornea. It was horrible to look at and sometimes it would make me physically sick to my stomach. Not because it grossed me out, but mainly because I was scared for her and knew that those areas were very thin...what would happen if those areas ever broke open? It would be a disaster for her. After each surgery it would flatten out, but then slowly would start to bulge out again.
Since her cornea surgery back in June, I have not seen anything close to what we were used to seeing in her left eye. Maybe I was overlooking it? Maybe I saw it but never acknowledged it because the doctors always said she looked ok? I see her all day, everyday and maybe I simply just didn't notice the change because it has occured so slowly and it wasn't as noticeable as it was in the past. People who don't see her everyday can pick up on how different she looks more easily than I can. I guess it's kind of like when someone tells you that you look like you have lost weight, but you haven't noticed it yourself...small changes go un noticed until someone else points them out.
First thing this morning I took a good look at her eye and yes, I see it does look like it's started to bulge out again. This time it's her whole eye, not just the weak areas at the top of her cornea. It's more noticeable when she looks down or closes her eye because you can see the difference in how large her eye lids are. My heart sank, but I knew that the pressure was still elevated and didn't expect the Pilocarpine to really work any kind of miracle, so it's not a surprise. Thankfully we go to see Dr. Kane tomorrow and I can voice my concern to him right away. If she needs the surgery for the second valve, I want her to have it as soon as possible. The higher pressure can compromise her new cornea and she can't afford to have this one reject just because of the glaucoma. She is doing so well right now visually and I don't want that to change.
I'm thankful that my friend pointed this out to me, otherwise I might not have been so aware of what was happening. Hopefully now I can push Dr. Kane to go forward with the surgery sooner than later.
I hate that this is a never ending battle.