11/19/09
You know there is something to be said for a 2 year old who has been through 15 surgeries and still has a smile on her face everyday. It just blows me away.
We got to the hospital early since she was Dr. Kane's first case of the day. We were a little late because of traffic on the bridge, but that actually worked in our favor because once we got there they got things started for her pretty quickly. I think she is catching on to what being in the hospital means for her because she completely broke down crying when the nurse tried to put on her ID bracelet. "It's just a bracelet Emmy, it's not hurting you" is what I said to her, but she knows better. It's not the bracelet that hurts, it's what having the bracelet on means...
After doing all the pre-op stuff and answering the questions about her health and medicines, we were brought back into the stage 2 room. She was given the "Happy Juice" again, which she really needs now. She understands more now and isn't so willing to just go with the nurses into the OR. This calmed her down alot, but we struggled with keeping her from running around. Once she gets the sedative, she can't walk around...drunk 2 year olds don't walk very well. I suited up and brought her into the OR. By now she was pretty out of it, but once they put the mask on she fought it until the anesthesia finally won and she was out. I pulled down my mask and kissed her..."Mommy loves you baby girl, stay strong. I'll be here when you wake up, I promise"... Before I left the operating room, I looked around and took note of everything. So many machines, instruments, wires, monitors, beeping noises, IV bags, needles, nurses...and the miraculous Dr. Kane. This HAD to work, she can't keep going through this....but I've found myself saying that with every surgery so I'm not sure it has much power anymore.
I didn't cry until I saw Jason outside in the hallway. How is it that Emily seems to be so strong yet I can't keep it together? Aren't I supposed to be the strong one? Most days I feel like I am Supermom with the strength of steel, but not on Surgery days, this is when I melt into a puddle on the floor just waiting for someone else to mop me up. Today was going to be a LONG day. Emily would be in surgery for five hours or more so at least I came prepared with things to keep me busy. But first...hug my husband as tight as possible, cry as much as I needed to, wipe away the tears and take a deep breath. Ok, I feel better...now lets go get the one thing that seems to comfort just about every emotion in the book...food.
I have to say that I am pretty disappointed in the food selection at the hospital, even in the main cafeteria...not much to choose from. We ended up sharing a bagel and splitting a donut. We even had to pay extra for the butter. Ridiculous. After milling around the gift shop, checking out the bookstore across the street (which is mainly all medical stuff since Columbia is a teaching hospital) and once again finding nothing interesting in the coffee shop, we made our way back up to the 4th floor. We got our things out of the locker and settled into our seats in the waiting room. I think Jason read some of his fishing book and then closed his eyes to take a nap...I worked on my Christmas cards. At least I could accomplish one thing during our long wait. I had to laugh, our cards have the word "Joy" written on them in silver glitter and after writing out 40+ cards...there was glitter EVERYWHERE! I was listening to some good music on my ipod and for the most part it kept my mind off of what was going on. A couple songs in particular made me smile and think of some of the happier moments I've had this past year. Without some of those really happy and fun times, I know this year would have been so much more difficult. Smiling...Laughing...Feeling Alive. Amongst all the sadness and tears, I somehow managed to find some Joy in my life. Laughing with friends has really helped me balance the ups and downs this year, and for that I am so very thankful.
A few hours passed and we were really hungry so Jason went on a hunt for something resembling a sandwich. Of course within 10 minutes of him leaving Dr. Kane came out to find us. He said that the surgery went very well. He removed a glaucoma valve from both the right and left eye and performed a Trabeculectomy (sp?) on the right eye. That means he created a new pathway for the eye fluid to drain from, allowing the pressure to be lowered naturally without any valves or medication. The risk involved with this procedure is that the eye pressure could become too low and in that case she would have to go back into the OR and have fluid injected back into her eye to prevent her eye from collapsing. That scares me to death.
Dr. Kane explained that the surgery went well and that his one concern was that the surface of her left cornea looked rough. Dr. Zaidman had recently diagnosed her with Dry Eye and gave us some lubricating drops to help fix it. It looked better to me, but Dr. Kane still didn't like the way it looked and suggested we use the nighttime ointment instead of the drops. We think she is sleeping with her eye not completely shut and the ointment will help keep it moist overnight. Her right eye was patched but her left eye was not...so she had some bloody discharge leaking from that eye, especially when she started crying. That was hard to see. When her eye is patched, we never see the blood, only on the gauze the next day when the patch is removed. But seeing her bleeding like that hit me pretty hard. That is something I will never forget.
Emily must have been so thirsty because she drank just about 3 full cups of juice while we were in recovery. She was all cozy and warm in my arms the whole time, so I never felt it... but her diaper leaked and my entire leg was soaking wet. She must have been so uncomfortable but with all the IV tubes and monitor wires it would have taken a small army just to change her diaper, so we never even gave it a thought. Next time we'll recruit the army.
I was exhausted in every sense of the word. I fell asleep holding Em in the rocking chair in recovery but I kept twitching myself awake...that was SO ANNOYING! You know, when you just drift off and then your nerves decide to wake you up by making your arm or leg spasm for no logical reason? Yeah...after an hour and a half it got really old. After we were on our way home, I fell asleep in the car, even forgoing a 10 minute trip into the store alone (for a change) to sleep. Jason went in and picked up some of the nighttime dry eye ointment and milk. By the time we got home and got everyone in bed, I was completely wiped out. Thank god Emily slept through the night because I wouldn't have been in any shape to get up at 2am and comfort her. That is probably the most tired I have been in a very long time. Maybe the emotional toll it took on me to actually get her through the surgery, after it had been postponed so many times, finally caught up with me. It was almost as if God said "ok she is out of surgery, it's over...you can rest now".
Thursday, November 19, 2009
Wednesday, November 18, 2009
Surgery Tomorrow - #15
It's been over a month since I posted on this blog and I apologize to those who return on a regular basis to get an update on how Emily is doing. This past month has been ridiculously crazy and I have not had time to do very much writing. In fact you should see my house right now, laundry is out of control! But that's besides the point. This post is just to briefly update what has been going on, I will elaborate in my next few posts.
Emily's surgery has been postponed 3 times because she has been sick. Most recently it was postponed from last Thursday to tomorrow. The boys got sick and then so did she, I am so frustrated at this point, I just want it to be over. 5 hours....F I V E hours she will be in the OR. Just scary. I am feeling kind of numb about it right now. I might be a mess when I am there tomorrow, but I have some good music on my ipod, a laptop to write with and I am bringing Christmas cards to write out. That should keep me busy and my mind off of things for a little while. Maybe I will just pull up a gurney and take a nap. Lord knows I need to sleep more.
About 3 weeks ago, Emily turned two and wow was that an emotional day for me! I will post pictures and elaborate on how things went another time, but lets just say I was such a proud mommy that day. My little Emmy has come so far and been through so much...and she was just so happy that day (and everyday for that matter). I love her so much, she really is the light in all this darkness. Happy Birthday Cupcake!
Personally, I have been through a vast array of emotions over the last month or so. Having some pretty steep highs and really low lows. There's that damned roller coaster again, still haven't gotten off the ride I guess. I have found that I am subconsciously distracting myself from dealing with alot of emotional stuff lately. I've tried to keep myself busy, especially on weekends by getting together with friends. I need to have someone to laugh with, or laugh at. Just a couple weeks ago we had friends over and someone said something that really wasn't that funny, but I just giggled and giggled...I laughed so much that it eventually turned into an uncontrollable laugh/cry thing...all my emotions letting go at the same time. I haven't laughed like that in a long long time. I think what set me off was the word "jiggled"...not sure what we were talking about but it just struck me as hilarious. Periodically during my day I will think back to a conversation I had or comment that was made and it will make me smile or laugh to myself, sometimes even out loud. It's moments like those that get me through my day. Thank you to all who make me laugh, you are keeping me sane. Music has been therapeutic for me as well. The more I listen to it, the louder it speaks to me. All of a sudden I am hearing meaning in songs that I've heard a hundred times. It's fantastic.
I am really glad that my husband and I have been able to start getting out more, just the two of us and with friends. We really need it and the timing couldn't be better. The holidays are coming and this is typically my favorite time of year...time to celebrate life, love and friendship. A time for miracles and a time to BELIEVE.
Right now, we need to BELIEVE in Emily's doctors, rely on our love and friendships to get us through each day...and pray for a MIRACLE. God, please watch over our little girl tomorrow...give her the strength and courage to get through it. Give her doctors the knowledge and ability to help her, to fix her, to heal her.
I will update again tomorrow...
Emily's surgery has been postponed 3 times because she has been sick. Most recently it was postponed from last Thursday to tomorrow. The boys got sick and then so did she, I am so frustrated at this point, I just want it to be over. 5 hours....F I V E hours she will be in the OR. Just scary. I am feeling kind of numb about it right now. I might be a mess when I am there tomorrow, but I have some good music on my ipod, a laptop to write with and I am bringing Christmas cards to write out. That should keep me busy and my mind off of things for a little while. Maybe I will just pull up a gurney and take a nap. Lord knows I need to sleep more.
About 3 weeks ago, Emily turned two and wow was that an emotional day for me! I will post pictures and elaborate on how things went another time, but lets just say I was such a proud mommy that day. My little Emmy has come so far and been through so much...and she was just so happy that day (and everyday for that matter). I love her so much, she really is the light in all this darkness. Happy Birthday Cupcake!
Personally, I have been through a vast array of emotions over the last month or so. Having some pretty steep highs and really low lows. There's that damned roller coaster again, still haven't gotten off the ride I guess. I have found that I am subconsciously distracting myself from dealing with alot of emotional stuff lately. I've tried to keep myself busy, especially on weekends by getting together with friends. I need to have someone to laugh with, or laugh at. Just a couple weeks ago we had friends over and someone said something that really wasn't that funny, but I just giggled and giggled...I laughed so much that it eventually turned into an uncontrollable laugh/cry thing...all my emotions letting go at the same time. I haven't laughed like that in a long long time. I think what set me off was the word "jiggled"...not sure what we were talking about but it just struck me as hilarious. Periodically during my day I will think back to a conversation I had or comment that was made and it will make me smile or laugh to myself, sometimes even out loud. It's moments like those that get me through my day. Thank you to all who make me laugh, you are keeping me sane. Music has been therapeutic for me as well. The more I listen to it, the louder it speaks to me. All of a sudden I am hearing meaning in songs that I've heard a hundred times. It's fantastic.
I am really glad that my husband and I have been able to start getting out more, just the two of us and with friends. We really need it and the timing couldn't be better. The holidays are coming and this is typically my favorite time of year...time to celebrate life, love and friendship. A time for miracles and a time to BELIEVE.
Right now, we need to BELIEVE in Emily's doctors, rely on our love and friendships to get us through each day...and pray for a MIRACLE. God, please watch over our little girl tomorrow...give her the strength and courage to get through it. Give her doctors the knowledge and ability to help her, to fix her, to heal her.
I will update again tomorrow...
Tuesday, October 6, 2009
Oh My God...I Can See The Tube
After we noticed Emily's eye looked different on the night the drainage tube opened up on it's own, we took pictures of her eye mainly because it was the best way to get a clear view of what was going on. She moves around so much and it's hard to get a good solid look at her eye. As soon as I took a few pictures and looked back at them, my first words were "Oh My God...I can see the tube." I didn't know whether to be completely freaked out, or stunned with amazement. My husband told me I needed to post a picture of it so that everyone else can see what it looks like. So...here it is, a close of up Emily's Left eye. I didn't remove the red eye from the photo because it took away from the clarity and doesn't leave her eye looking natural.
You can clearly see the drainage tube in the center of the eye...its on an angle from right to left.
Reading For Emily
Thanks to a couple of amazing friends, A Read-a-Thon has been set up to benefit Emily. It will start on 10/25, which is Emily's Birthday, and ends on 11/25.
Please check out the webpage for more information.
www.readingforemily.webs.com
Thank you to all who participate.
Please check out the webpage for more information.
www.readingforemily.webs.com
Thank you to all who participate.
Monday, October 5, 2009
A Blessing in Disguise
September 24th, 2009
Emily's surgery was cancelled...
You know, I find it very ironic that the hospital asks you to arrive 2 hours before the scheduled surgery time, and then you sit there and wait for hours and hours. We finally stopped playing their stupid game and refused to rush to get there on time. But of course this one time we tried to get there on time, we hit traffic on the GW bridge. We finally made it over the bridge and had just pulled up to the traffic light by the hospital when my cell phone rang. It was the doctors office calling to find out where we were. "We hit traffic" is what I said and told her we were just outside the hospital. Within 2 minutes of hanging up, the phone rang again...this time it was a nurse at the hospital... "Emily is scheduled for surgery today and we just wanted to know if you were still coming." We were about 30 minutes late, are you kidding me? I should have just said "no we decided to skip it today and go to the park instead". I wonder what she would have said. Lets get this straight...you are going to make us sit there and wait for hours and hours anyway, does it really matter if we aren't there on time? And by the way, would you please cash my check from 3 months ago? I am not giving you any more money until you cash my measly $15 check. UGH!
We get there, check in, get Emily's ID bracelet and sit down. Let the waiting begin. 4 1/2 hours later we were sent home without even getting near the OR or Recovery Room. Why? Two Words...RUNNY NOSE. There was a complication with the surgery on the little boy who was Dr. Kane's first patient that day, so that was the reason for the extended delay in the surgery. We know his family and our prayers were with them and their little boy that day. Thankfully the surgery turned out ok and I believe he is doing well. But what I am a little annoyed at (or REALLY annoyed at) is the fact that we shouldn't have even gone to the hospital at all that day.
About a week earlier Emily had developed a yucky runny nose for which she was put on antibiotics in the event it was a sinus infection. The nurse who called us the night before to give us our arrival time and ask some questions about Emily told us just to let the nurse know about the runny nose (and post nasal drip cough she also had developed) when we got there. That is exactly what we did. Now granted, the nurse who took all of Emily's vitals and information did not seem to be the most intelligent nurse we had ever seen, but she didn't even bat an eyelash when we told her about the runny nose, cough and medicine she was on. So we just assumed it was not a concern. It was not until we met with the anesthesiologist (4 1/2 hours later and about 5 minutes before she was to be taken into the OR) that it was all of a sudden an issue. Great...just great.
She expressed her concerns to us and went to talk to Dr. Kane. A few minutes later Dr. Kane explained to us why he felt it was best to postpone the surgery to another day. If a child has had a cold, runny nose and cough, their bronchial tubes may be irritated. During the surgery Emily would need to be intubated, which means a tube is placed down her throat to help maintain a clear airway during the surgery. If her bronchial tubes are irritated, the tube and pure oxygen could create an asthma type reaction and under anesthesia that is VERY BAD. There was a possibility of her ending up in ICU for up to 2 weeks. Because Dr. Kane didn't feel it was extremely urgent for Emily to have the surgery, the risks involved were not justified. We totally agreed.
He also told us that the way the valve and drainage tube is designed, allows for the stitch around the tube to dissolve on its own if it is not surgically cut within a specific time frame. If by chance we can't get her into the operating room within the next few weeks, it is possible that the tube could open up on its own and the valve would start working. I guess it's kind of like a fail safe feature for situations like this.
The anesthesiologist somewhat apologized to me because she said she should have come and talked to us alot sooner, but honestly that was of no consequence. We still made the trip into the city, starved our daughter for over 17 hours and wasted an entire day because the idiot nurse who called us the night before should have told us to talk to the doctor before we came to the hospital that morning. Believe me, all of this will be written in an letter to the hospital or as part of their patient satisfaction survey. I doubt we will get one, we've only ever gotten one and that's when I pretty much ripped them apart for letting us sit in the waiting room for more than 6 hours without giving us any reason for the delay in her surgery START time or food for us and or Emily. The next time we were there, we were given food passes to the coffee shop while Emily was in surgery. Coincidence??? Anyway, the reasons for the cancellation of the surgery was justified and we were ok with it. It's the other nonsense that brought us to that point that is just not acceptable.
The next day I called and made an appointment to see Dr. Kane in his office the following Friday, which was a week from then. Later that night, Jason and I were playing with Emily on the floor in the living room and I looked at her and noticed her left eye looked different. It looked smaller, almost like it was deflating. I was scared to death. What was happening? Her eye was a little red on the outside corner and her entire eye looked drastically smaller than it was just minutes before. But wait....it actually looked like it was the same size as the right eye. Then a light bulb went off in my head...the TUBE OPENED UP! That had to be what happened, that was the only explanation I could come up with.
Previously, her left eye was noticeably larger than her right. Initially, the larger clear section of her cornea allowed for an optical illusion to make her eye look bigger, when it really wasn't. But as time went by and the pressure increased, eventually it really did become bigger than the right eye. So it would only make sense that if the tube opened itself up and the fluid started draining out of her eye, it would shrink back down to normal size. In my heart I knew that was what happened. We kept her up later that night just to monitor what was happening, but she was acting fine so we let her go to sleep. That weekend was very busy, the bake sale for Emily and blood drive was the next day so unless something major happened overnight we were going to have to wait until Monday to call Dr. Kane. When I finally did talk to him, he confirmed my thoughts and said that more than likely the tube had opened up. We were to stop giving her the Diamox, Timolol and Xalatan in the left eye.
Over the next few days, she seemed to be doing just fine and her eye looked AWESOME! Everyone who sees her is just in amazement at how good it looks, Dr. Kane included. When we did finally see him on Friday Oct. 2nd he said "wow, that really is one great looking transplant". From his mouth to God's ears...please God, keep her cornea clear and her pressure low.
He tested her pressure in the left by just pressing on her eye, he said it felt very soft and the pressure was probably in the single digits! But how low was too low? He said not to worry about it because it would probably come up a little bit over time, but she has NEVER had single digit pressure readings in either eye...that was WONDERFUL for me to hear. He did an ultrasound on both eyes and determined 2 things...1 - the valve in the left eye was working well...and 2 - there was almost no fluid surrounding the valve in the right eye which meant it wasn't working. My guess is that the valve and tube are encased in scar tissue again which means no fluid can get in or out. BUT...her pressure was in the high teens, which is a far cry from the 30/31 reading that Dr. Zaidman had gotten a month earlier during her EUA.
So...now what do we do???
Her surgery was supposed to address 4 things: open the tube in the left eye, remove the original valve and tube in the left eye, remove the valve in the right eye and create a new pathway for fluid to drain from.
Well, the tube is open now, so we can cross that off the list...Dr. Kane thinks the left eye looks so good that he is really hesitant to go back in and take the original valve out - he doesn't want to mess with it if he doesn't really have to. And the right eye pressure is much lower than we thought, so does that valve really need to come out? Does she really need to have the Trabeculectomy done? All of these questions must be discussed with Dr. Zaidman before any further action (and consequent surgeries) can be planned. Dr. Kane emailed him and he said he will call me once they have talked and come up with an agreeable plan. Now I sit and wait for the phone to ring...
So, was it divine intervention that day in the hospital? Was someone above looking out for Emily and guiding her away from being in the OR that day? It is very possible and completely believable given the information gathered at the appointment that Emily might not honestly need all of those procedures done, at least not right now. Timing is everything. For one reason or another she was not meant to have surgery that day. Her runny nose was really a blessing in disguise.
Ironically...the day in the hospital was the last time we ever saw her nose running or heard her cough. Since then she has been perfectly healthy.
Emily's surgery was cancelled...
You know, I find it very ironic that the hospital asks you to arrive 2 hours before the scheduled surgery time, and then you sit there and wait for hours and hours. We finally stopped playing their stupid game and refused to rush to get there on time. But of course this one time we tried to get there on time, we hit traffic on the GW bridge. We finally made it over the bridge and had just pulled up to the traffic light by the hospital when my cell phone rang. It was the doctors office calling to find out where we were. "We hit traffic" is what I said and told her we were just outside the hospital. Within 2 minutes of hanging up, the phone rang again...this time it was a nurse at the hospital... "Emily is scheduled for surgery today and we just wanted to know if you were still coming." We were about 30 minutes late, are you kidding me? I should have just said "no we decided to skip it today and go to the park instead". I wonder what she would have said. Lets get this straight...you are going to make us sit there and wait for hours and hours anyway, does it really matter if we aren't there on time? And by the way, would you please cash my check from 3 months ago? I am not giving you any more money until you cash my measly $15 check. UGH!
We get there, check in, get Emily's ID bracelet and sit down. Let the waiting begin. 4 1/2 hours later we were sent home without even getting near the OR or Recovery Room. Why? Two Words...RUNNY NOSE. There was a complication with the surgery on the little boy who was Dr. Kane's first patient that day, so that was the reason for the extended delay in the surgery. We know his family and our prayers were with them and their little boy that day. Thankfully the surgery turned out ok and I believe he is doing well. But what I am a little annoyed at (or REALLY annoyed at) is the fact that we shouldn't have even gone to the hospital at all that day.
About a week earlier Emily had developed a yucky runny nose for which she was put on antibiotics in the event it was a sinus infection. The nurse who called us the night before to give us our arrival time and ask some questions about Emily told us just to let the nurse know about the runny nose (and post nasal drip cough she also had developed) when we got there. That is exactly what we did. Now granted, the nurse who took all of Emily's vitals and information did not seem to be the most intelligent nurse we had ever seen, but she didn't even bat an eyelash when we told her about the runny nose, cough and medicine she was on. So we just assumed it was not a concern. It was not until we met with the anesthesiologist (4 1/2 hours later and about 5 minutes before she was to be taken into the OR) that it was all of a sudden an issue. Great...just great.
She expressed her concerns to us and went to talk to Dr. Kane. A few minutes later Dr. Kane explained to us why he felt it was best to postpone the surgery to another day. If a child has had a cold, runny nose and cough, their bronchial tubes may be irritated. During the surgery Emily would need to be intubated, which means a tube is placed down her throat to help maintain a clear airway during the surgery. If her bronchial tubes are irritated, the tube and pure oxygen could create an asthma type reaction and under anesthesia that is VERY BAD. There was a possibility of her ending up in ICU for up to 2 weeks. Because Dr. Kane didn't feel it was extremely urgent for Emily to have the surgery, the risks involved were not justified. We totally agreed.
He also told us that the way the valve and drainage tube is designed, allows for the stitch around the tube to dissolve on its own if it is not surgically cut within a specific time frame. If by chance we can't get her into the operating room within the next few weeks, it is possible that the tube could open up on its own and the valve would start working. I guess it's kind of like a fail safe feature for situations like this.
The anesthesiologist somewhat apologized to me because she said she should have come and talked to us alot sooner, but honestly that was of no consequence. We still made the trip into the city, starved our daughter for over 17 hours and wasted an entire day because the idiot nurse who called us the night before should have told us to talk to the doctor before we came to the hospital that morning. Believe me, all of this will be written in an letter to the hospital or as part of their patient satisfaction survey. I doubt we will get one, we've only ever gotten one and that's when I pretty much ripped them apart for letting us sit in the waiting room for more than 6 hours without giving us any reason for the delay in her surgery START time or food for us and or Emily. The next time we were there, we were given food passes to the coffee shop while Emily was in surgery. Coincidence??? Anyway, the reasons for the cancellation of the surgery was justified and we were ok with it. It's the other nonsense that brought us to that point that is just not acceptable.
The next day I called and made an appointment to see Dr. Kane in his office the following Friday, which was a week from then. Later that night, Jason and I were playing with Emily on the floor in the living room and I looked at her and noticed her left eye looked different. It looked smaller, almost like it was deflating. I was scared to death. What was happening? Her eye was a little red on the outside corner and her entire eye looked drastically smaller than it was just minutes before. But wait....it actually looked like it was the same size as the right eye. Then a light bulb went off in my head...the TUBE OPENED UP! That had to be what happened, that was the only explanation I could come up with.
Previously, her left eye was noticeably larger than her right. Initially, the larger clear section of her cornea allowed for an optical illusion to make her eye look bigger, when it really wasn't. But as time went by and the pressure increased, eventually it really did become bigger than the right eye. So it would only make sense that if the tube opened itself up and the fluid started draining out of her eye, it would shrink back down to normal size. In my heart I knew that was what happened. We kept her up later that night just to monitor what was happening, but she was acting fine so we let her go to sleep. That weekend was very busy, the bake sale for Emily and blood drive was the next day so unless something major happened overnight we were going to have to wait until Monday to call Dr. Kane. When I finally did talk to him, he confirmed my thoughts and said that more than likely the tube had opened up. We were to stop giving her the Diamox, Timolol and Xalatan in the left eye.
Over the next few days, she seemed to be doing just fine and her eye looked AWESOME! Everyone who sees her is just in amazement at how good it looks, Dr. Kane included. When we did finally see him on Friday Oct. 2nd he said "wow, that really is one great looking transplant". From his mouth to God's ears...please God, keep her cornea clear and her pressure low.
He tested her pressure in the left by just pressing on her eye, he said it felt very soft and the pressure was probably in the single digits! But how low was too low? He said not to worry about it because it would probably come up a little bit over time, but she has NEVER had single digit pressure readings in either eye...that was WONDERFUL for me to hear. He did an ultrasound on both eyes and determined 2 things...1 - the valve in the left eye was working well...and 2 - there was almost no fluid surrounding the valve in the right eye which meant it wasn't working. My guess is that the valve and tube are encased in scar tissue again which means no fluid can get in or out. BUT...her pressure was in the high teens, which is a far cry from the 30/31 reading that Dr. Zaidman had gotten a month earlier during her EUA.
So...now what do we do???
Her surgery was supposed to address 4 things: open the tube in the left eye, remove the original valve and tube in the left eye, remove the valve in the right eye and create a new pathway for fluid to drain from.
Well, the tube is open now, so we can cross that off the list...Dr. Kane thinks the left eye looks so good that he is really hesitant to go back in and take the original valve out - he doesn't want to mess with it if he doesn't really have to. And the right eye pressure is much lower than we thought, so does that valve really need to come out? Does she really need to have the Trabeculectomy done? All of these questions must be discussed with Dr. Zaidman before any further action (and consequent surgeries) can be planned. Dr. Kane emailed him and he said he will call me once they have talked and come up with an agreeable plan. Now I sit and wait for the phone to ring...
So, was it divine intervention that day in the hospital? Was someone above looking out for Emily and guiding her away from being in the OR that day? It is very possible and completely believable given the information gathered at the appointment that Emily might not honestly need all of those procedures done, at least not right now. Timing is everything. For one reason or another she was not meant to have surgery that day. Her runny nose was really a blessing in disguise.
Ironically...the day in the hospital was the last time we ever saw her nose running or heard her cough. Since then she has been perfectly healthy.
Saturday, October 3, 2009
The Definition of Friendship
Over the past few years I have come to realize that friends are just as much a part of my family as my family is...sometimes they ARE my family. But what defines a friend? I've thought about it alot lately and found that no two friends are the same. Each friend provides their own unique purpose and place in your life.
Some friends are people you have known for years, the ones who you went to school with or grew up with. These are what I call "life friends". They have been in your life the longest. Some of them you talk to regularly, some have faded away and are not prominent in your life any longer. You might send a Christmas card to them (or not) but either way they will always be in your life. Time doesn't change anything for these friends, you can go years without talking and it doesn't matter. You pick up right where you left off.
"Situational Friends" are people you know because of a set of circumstances that lead you both to that first random meeting. Usually there is some form of commonality that creates the friendship. A meeting that occurs in the doctors office waiting room, a conversation with a coworker or with a complete stranger on an online message group for example. These friends all share something in common with you, it is the glue that keeps your friendship alive. These friends provide you with a sense of comfort, a feeling that you are not alone in life. Some of these friendships will not last forever, but the ones that impact your life in the most profound ways, will. These might be friends you see all the time, or never meet, but you know they will always be there for you when you need them.
"Go-To Friends" may be people you talk to all the time or only occasionally. But when you are looking for something specific...you know exactly who to call. Looking for a fun night out? Need to cry? Want to laugh? Need advice about X, Y or Z? Call your go-to friend, you know they will hook you up! Most people have multiple go-to friends, all have their own specialty.
"Comfort Friends" don't necessarily need to talk to you to comfort you, they just listen. And when you do need them to talk, they won't always have the right words, but it usually doesn't matter. Sometimes they know that what you really need is a hug. A hug from the right friend at the right time is always therapeutic. No words necessary. These friends are there for you anytime, day or night, no questions asked.
The "Unexpected Friend" sometimes is the dark horse in your life. This friend might be in the background most of the time, but one day comes front and center. Suddenly you realize you have more in common than you thought and your friendship takes on a whole new meaning. There is always a reason that this friend has been in your life, and until that "a-ha" moment happens, you don't fully understand their purpose or their significance.
"Best Friends" are very often a combination of all of the above. They are there for you ALWAYS. They don't judge you or question your actions or words. They fully understand you and love you unconditionally. You might talk to them multiple times a day, everyday. Or you might go days, weeks or months without talking at all.
"Spousal Friend" - this is the only type of friend for which you will only have one of. Your husband or wife is your default friend. Before you fall in love and get married, you are friends first. That friendship is continually growing and will never stop evolving. Your spousal friend has special privileges that no other friends has. (no further explanation needed) : ) One stipulation though, your spouse is always your best friend, but not your ONLY best friend. Friendships outside of your marriage is not only extremely important, but necessary for your marriage to be successful (and happy). You need other friends in your life, people who are not inside your "bubble" so to speak. Non spousal friends are not directly involved in your marriage or family. They can be objective and offer comfort and support in ways your spouse might not be able to...especially if you need someone to vent to about your husband or wife, or other family related issues. Otherwise all you will do is argue, and your marriage will suffer. And who wants that?
How often should you talk to your friends? Everyday or just once in a while? What do you talk about? Anything and everything...and sometimes nothing. There is no right or wrong amount of contact between friends. Whatever it is, it is.
"My Sacrifice" by Creed has a powerful message about friendship. I Love this song, Give it a listen...
http://www.youtube.com/watch?v=sMMpy81xInc
Some friends are people you have known for years, the ones who you went to school with or grew up with. These are what I call "life friends". They have been in your life the longest. Some of them you talk to regularly, some have faded away and are not prominent in your life any longer. You might send a Christmas card to them (or not) but either way they will always be in your life. Time doesn't change anything for these friends, you can go years without talking and it doesn't matter. You pick up right where you left off.
"Situational Friends" are people you know because of a set of circumstances that lead you both to that first random meeting. Usually there is some form of commonality that creates the friendship. A meeting that occurs in the doctors office waiting room, a conversation with a coworker or with a complete stranger on an online message group for example. These friends all share something in common with you, it is the glue that keeps your friendship alive. These friends provide you with a sense of comfort, a feeling that you are not alone in life. Some of these friendships will not last forever, but the ones that impact your life in the most profound ways, will. These might be friends you see all the time, or never meet, but you know they will always be there for you when you need them.
"Go-To Friends" may be people you talk to all the time or only occasionally. But when you are looking for something specific...you know exactly who to call. Looking for a fun night out? Need to cry? Want to laugh? Need advice about X, Y or Z? Call your go-to friend, you know they will hook you up! Most people have multiple go-to friends, all have their own specialty.
"Comfort Friends" don't necessarily need to talk to you to comfort you, they just listen. And when you do need them to talk, they won't always have the right words, but it usually doesn't matter. Sometimes they know that what you really need is a hug. A hug from the right friend at the right time is always therapeutic. No words necessary. These friends are there for you anytime, day or night, no questions asked.
The "Unexpected Friend" sometimes is the dark horse in your life. This friend might be in the background most of the time, but one day comes front and center. Suddenly you realize you have more in common than you thought and your friendship takes on a whole new meaning. There is always a reason that this friend has been in your life, and until that "a-ha" moment happens, you don't fully understand their purpose or their significance.
"Best Friends" are very often a combination of all of the above. They are there for you ALWAYS. They don't judge you or question your actions or words. They fully understand you and love you unconditionally. You might talk to them multiple times a day, everyday. Or you might go days, weeks or months without talking at all.
"Spousal Friend" - this is the only type of friend for which you will only have one of. Your husband or wife is your default friend. Before you fall in love and get married, you are friends first. That friendship is continually growing and will never stop evolving. Your spousal friend has special privileges that no other friends has. (no further explanation needed) : ) One stipulation though, your spouse is always your best friend, but not your ONLY best friend. Friendships outside of your marriage is not only extremely important, but necessary for your marriage to be successful (and happy). You need other friends in your life, people who are not inside your "bubble" so to speak. Non spousal friends are not directly involved in your marriage or family. They can be objective and offer comfort and support in ways your spouse might not be able to...especially if you need someone to vent to about your husband or wife, or other family related issues. Otherwise all you will do is argue, and your marriage will suffer. And who wants that?
How often should you talk to your friends? Everyday or just once in a while? What do you talk about? Anything and everything...and sometimes nothing. There is no right or wrong amount of contact between friends. Whatever it is, it is.
"My Sacrifice" by Creed has a powerful message about friendship. I Love this song, Give it a listen...
http://www.youtube.com/watch?v=sMMpy81xInc
Saturday, September 19, 2009
Some Words of Gratitude
"No person was ever honored for what he received. Honor has been the reward for what he gave." - Calvin Coolidge
On behalf of our family, we would like to thank everyone for all that you have done and continue to do for us. Many of you have been there supporting us from the day that Emily was born. Some of you we have just met and we are now here to give each other support. And yet we may never meet others who are reading this or who have reached out to us in other ways. Your kindness and generosity has overwhelmed us and we will be eternally grateful. We will never be able to say thank you enough.
"Kindness is the language which the
deaf can hear and the blind can see." ~ Mark Twain
Hope, Sacrifice, Fear and Compassion
Anyone who has a spouse, child, parent or sibling with a serious medical condition will understand the true meaning of the words hope, sacrifice and fear. Fear sets in immediately. It's ugly, painful and follows you around like the darkness of your shadow. But even on the darkest of days, there is a tiny light called hope. When hope comes knocking at your door, you hold on to it as tight as possible and never let go. It's a difficult balance because the fear never leaves, even when hope arrives.
The sacrifice that you make as a family becomes second nature. You find a way to provide the medical care for your loved one, there is no choice...you just do it. You make changes in your life to accommodate their needs without even knowing it. I, as a mother, have made a million sacrifices for my family. Don't ask me to name them all because I probably don't even know I'm doing any of them.
Being on the inside of the "bubble" I can only see what is right around me. Emily's immediate medical care, the needs of my two boys and the responsibility I share with my husband to raise a happy and healthy family. That is my bubble. If you aren't inside my bubble...how can you possibly understand what I am going through? Some people try, others are just glad they are on the outside.
Once you have a bubble of your own...you are no longer immune to other bubbles that are like yours. You find compassion for others who are dealing with the same fear and sacrifice that you are. Suddenly you understand things you didn't before. You no longer see a sick child and think to yourself "I can't imagine what that family is going through". You can imagine it because you are living it.
The sacrifice that you make as a family becomes second nature. You find a way to provide the medical care for your loved one, there is no choice...you just do it. You make changes in your life to accommodate their needs without even knowing it. I, as a mother, have made a million sacrifices for my family. Don't ask me to name them all because I probably don't even know I'm doing any of them.
Being on the inside of the "bubble" I can only see what is right around me. Emily's immediate medical care, the needs of my two boys and the responsibility I share with my husband to raise a happy and healthy family. That is my bubble. If you aren't inside my bubble...how can you possibly understand what I am going through? Some people try, others are just glad they are on the outside.
Once you have a bubble of your own...you are no longer immune to other bubbles that are like yours. You find compassion for others who are dealing with the same fear and sacrifice that you are. Suddenly you understand things you didn't before. You no longer see a sick child and think to yourself "I can't imagine what that family is going through". You can imagine it because you are living it.
FIVE Hours?
This past week Emily had exams by both her doctors in New York. Dr. Zaidman was once again very pleased at how the left eye looks, but sadly he never really comments on the right one anymore. I guess he knows it's not doing well so he doesn't bother? I don't know. But all is well with the left one and he won't need to see her for another 4 weeks. My guess is because he knows we will be busy seeing Dr. Kane fairly often...
We saw Dr. Kane this past Wednesday and talked about her next surgery. She will be going in on Sept. 24th, next Thursday. Originally she was only going in for a short procedure to open the tube in the second glaucoma valve. But it has quickly turned into a major surgery on both eyes that will require 5 hours in the operating room. FIVE HOURS! I thought I had heard him wrong when he said that, but I didn't. He will be doing two procedures on each eye and his estimated time is 2.5 hours per eye. I really don't know what I am going to do. I think I will be going out of my mind with fear and anxiety. The longest she has been under was almost 4 hours, and that was because there was a last minute complication before the surgery and he didn't know how long it was going to take to fix.
Here is what she is going to have done:
Left - Open drainage tube on 2nd valve, which is behind the lens implant, and remove the original valve which is more towards the front of her eye. It is too close to the cornea and is not functioning so it will just be removed.
Right - Originally only an exam was to be performed on this eye. But because of recent high eye pressure, the valve is going to be removed and instead of replacing it with another one, she will have a procedure called a Trabeculectomy done. This is done to create another pathway for the eye fluid to drain from. Dr. Kane planned on just replacing the valve, but after talking with Dr. Zaidman he changed his mind and is opting for this other procedure.
I was told the success rate for the Trabeculectomy is about the same if not slightly higher than putting another valve in. It's the most common form of Glaucoma surgery. Dr. Zaidman wanted this done instead of another valve because he is planning on doing the partial transplant on the right eye. I didn't get specifics as to why it would be better, but all I was told was that this is what Dr. Z wanted.
Although the success rate may be slightly better, the post operative care may be more difficult. Emily's eye pressure will have to be monitored very closely for the first few weeks because if at any time her pressure is dangerously low, she will need to go back into the operating room and have fluid injected into her eye. Basically to prevent her eye from collapsing...I am not sure I like the sound of this. Can't we just do the valve surgery again?
If there is a silver lining to any of this, it would be that both eyes will be worked on that day instead of doing the left eye now and then going back to do the right eye. One less trip to the hospital, one less time she will be under anesthesia, one less traumatic experience for Emily. This will be surgery #15....with the impending transplant in the right eye as #16.
We do not go back to see Dr. Zaidman until Oct. 16th so at least I know she won't be having the transplant before her birthday. She has a little over a month until she turns 2 and I would rather not celebrate her birthday in the hospital if I can help it. She deserves to be a happy little girl on her birthday...with no black eyes.
But first we need to get through her five hour surgery. I know she will do fine, she is one strong little girl. But her mommy is starting to come apart at the seams.
We saw Dr. Kane this past Wednesday and talked about her next surgery. She will be going in on Sept. 24th, next Thursday. Originally she was only going in for a short procedure to open the tube in the second glaucoma valve. But it has quickly turned into a major surgery on both eyes that will require 5 hours in the operating room. FIVE HOURS! I thought I had heard him wrong when he said that, but I didn't. He will be doing two procedures on each eye and his estimated time is 2.5 hours per eye. I really don't know what I am going to do. I think I will be going out of my mind with fear and anxiety. The longest she has been under was almost 4 hours, and that was because there was a last minute complication before the surgery and he didn't know how long it was going to take to fix.
Here is what she is going to have done:
Left - Open drainage tube on 2nd valve, which is behind the lens implant, and remove the original valve which is more towards the front of her eye. It is too close to the cornea and is not functioning so it will just be removed.
Right - Originally only an exam was to be performed on this eye. But because of recent high eye pressure, the valve is going to be removed and instead of replacing it with another one, she will have a procedure called a Trabeculectomy done. This is done to create another pathway for the eye fluid to drain from. Dr. Kane planned on just replacing the valve, but after talking with Dr. Zaidman he changed his mind and is opting for this other procedure.
I was told the success rate for the Trabeculectomy is about the same if not slightly higher than putting another valve in. It's the most common form of Glaucoma surgery. Dr. Zaidman wanted this done instead of another valve because he is planning on doing the partial transplant on the right eye. I didn't get specifics as to why it would be better, but all I was told was that this is what Dr. Z wanted.
Although the success rate may be slightly better, the post operative care may be more difficult. Emily's eye pressure will have to be monitored very closely for the first few weeks because if at any time her pressure is dangerously low, she will need to go back into the operating room and have fluid injected into her eye. Basically to prevent her eye from collapsing...I am not sure I like the sound of this. Can't we just do the valve surgery again?
If there is a silver lining to any of this, it would be that both eyes will be worked on that day instead of doing the left eye now and then going back to do the right eye. One less trip to the hospital, one less time she will be under anesthesia, one less traumatic experience for Emily. This will be surgery #15....with the impending transplant in the right eye as #16.
We do not go back to see Dr. Zaidman until Oct. 16th so at least I know she won't be having the transplant before her birthday. She has a little over a month until she turns 2 and I would rather not celebrate her birthday in the hospital if I can help it. She deserves to be a happy little girl on her birthday...with no black eyes.
But first we need to get through her five hour surgery. I know she will do fine, she is one strong little girl. But her mommy is starting to come apart at the seams.
My Week Off
September 13, 2009
For the first time in MONTHS I did not need to bring Emily to the doctor at all this week! Wow, I had an entire week off? What did I do with my free time? (umm....there is no such thing) Well I guess the timing was really good because most of the week was spent preparing for Tyler's birthday party and getting back into school routines.
Without this week off I would have been up until 3am every night rolling fondant and doing laundry.
However, Emily will be going to both doctors next week...Wednesday I will be in Manhattan and Friday I will be in Westchester. So on we go...
For the first time in MONTHS I did not need to bring Emily to the doctor at all this week! Wow, I had an entire week off? What did I do with my free time? (umm....there is no such thing) Well I guess the timing was really good because most of the week was spent preparing for Tyler's birthday party and getting back into school routines.
Without this week off I would have been up until 3am every night rolling fondant and doing laundry.
However, Emily will be going to both doctors next week...Wednesday I will be in Manhattan and Friday I will be in Westchester. So on we go...
Tuesday, September 15, 2009
I Didn't Cry Today
September 2, 2009
It has been almost exactly 3 months since Emily had the second corneal transplant in her left eye. Today she finally had the stitches removed. The hospital had a warm, comforting feel to it today. I'm not sure if it was because the nurses all recognized us and were so amazed at how big Emily has gotten or the fact that we were only there for an EUA and removal of the stitches. Maybe it was a combination of both. The nurses couldn't stop commenting on how cute Emily was and were shocked to realize that the first time she was there was almost 2 years ago. That time span seems like a long time, but for us it has gone by in a flash. Because we are constantly at the hospital so often, each day/visit seems to just blur into the next. It's kind of dizzying now that I think about it.
Emily has definitely started to show her more independent side lately. While we tried to keep her entertained on the hospital bed while the nurse was asking us some questions, it was short lived. All she wanted to do was get down and explore. The nurse gave her a thermometer to play with, but in typical girl fashion she used it as a phone. I think she was talking to Tyler and Poppy (grandpa). But eventually she lost interest so we had to let her get down off the bed, or she would have started setting off heart monitors and pulling the oxygen tubes out of the wall! She walked all around the surgical area and up and down the OR Hallway. She would have walked herself right into the operating room if we let her!
When the time finally came for her to go into surgery, Jason suited up and walked her down. I followed them as far as I could, then I had to say goodbye. I kissed her and told her I loved her, just as I always do. "Be strong baby girl, Mommy will be here when you wake up". Then Jason took her through the double doors and out of my sight. This is usually the point in time when I get really emotional and cry. But for the first time I didn't. I was trying to be strong...I had to be strong. I didn't even have to fight back tears, they were simply not there. Was I scared for her? Of course...anytime she goes under anesthesia I am scared. But today she was not going to have anything major done. It was still surgery, but it was just to remove stitches. Oddly enough that seemed like a good reason for her to be in the hospital, if there is such a thing as a good reason.
It was a fairly short procedure, considering she's been in the operating room for upwards of 4 hours at some points. Jason and I went to get a bagel and drink and before we knew it she was in recovery. Dr. Zaidman had some good news for us. Her left eye looks great! The cornea is very clear and the lens implant is still in place. Her pressure was 21, but keeping in mind she had only had the 2nd valve implanted two weeks ago and was still on the Diamox, we knew why it wasn't as high as it had been. He suggested that when Dr. Kane goes back in to open the drainage tube on the 2nd valve that he removes the original valve because the tube is a little too close to the cornea for his liking. Dr. Kane had expected that he would suggest doing that.
But as I have learned to expect, with the good news comes the bad news. For some reason the pressure in the right eye was 30 today. Wow...30? I was really shocked at that number because her right eye has consistently been around 20 for quite some time now. Ok, lay it on me....let me guess...she needs more surgery on that eye? Ding Ding Ding! You are correct! I knew she was going to need a partial or possibly another complete corneal transplant in the right eye because of the scar tissue that formed in the center, but I was not anticipating anything related to the glaucoma. Dr. Z told us that he would leave it up to Dr. Kane to decide what he wanted to do about it, but he suggested that the valve be replaced or a second one put in. Great...once again, we can't just enjoy the good news can we?
He gave us a prescription for glasses, but told us not to fill it quite yet. We should wait until she saw Dr. Morgan and get his opinion first. She may need glasses for seeing close up because the lens implant allows her to see better far away, but causes the eye not to focus at close range.
We let Emily sleep for a while before really trying to wake her up and give her some juice. She was sleeping so peacefully...
Post Op Appointment With Dr. Kane
September 1, 2009
Today we saw Dr. Kane for his post op appointment. No infection....YAY! For a day or so Emily had been having some discharge in her left eye that caused some concern on my part, but he said it could have been some of the stitches causing irritation and thats how it works itself out. No sign of infection and her eye still feels fairly soft. He was glad to see that there was minimal redness and no bruising.
We are to continue the medications she is on and only change something if Dr. Zaidman feels its necessary. Emily has surgery tomorrrow with him to have her stitches removed. Dr. Kane also wants us to ask Dr. Zaidman if he feels the first valve and tube are too close to the cornea. If he feels it is, he will take it out when he goes in to open up the tube on the new valve. The placement of the second valve is much better for a variety of reasons, one of which is that it is no where near the cornea and shouldn't interfere with the health of the transplant. It's possible that the original valve and tube were too close and caused some of the rejection or other issues.
I am praying for more good news about the left eye. Tomorrow...stitches come out. Need to be at the hospital by 7:30 am.
Today we saw Dr. Kane for his post op appointment. No infection....YAY! For a day or so Emily had been having some discharge in her left eye that caused some concern on my part, but he said it could have been some of the stitches causing irritation and thats how it works itself out. No sign of infection and her eye still feels fairly soft. He was glad to see that there was minimal redness and no bruising.
We are to continue the medications she is on and only change something if Dr. Zaidman feels its necessary. Emily has surgery tomorrrow with him to have her stitches removed. Dr. Kane also wants us to ask Dr. Zaidman if he feels the first valve and tube are too close to the cornea. If he feels it is, he will take it out when he goes in to open up the tube on the new valve. The placement of the second valve is much better for a variety of reasons, one of which is that it is no where near the cornea and shouldn't interfere with the health of the transplant. It's possible that the original valve and tube were too close and caused some of the rejection or other issues.
I am praying for more good news about the left eye. Tomorrow...stitches come out. Need to be at the hospital by 7:30 am.
Follow up With Dr. Schubert
August 25, 2009
Today we had a follow up with Dr. Schubert, the doctor who assisted Dr. Kane in Emily's last surgery. Her eye pressure wasn't tested with the machine, but he did feel her eyes and he can tell if the pressure is high or not just by how soft or firm her eyes feel. So far so good. The left eye still feels soft which is an indication of lower pressure. There was no sign of infection, which was one of our biggest concerns...infections in the eye are BAD...very bad. Her retina was still attached, I didn't know they were concerned about it not being attached so that was surprising for me to hear, but none the less good news. Her optic nerve looked ok, in comparison to how it looked 5 days ago in surgery I am not sure. Cornea and Lens Implant both looked very good and he was encouraged by how she was walking around and "seeing".
I think all her doctors are very surprised by how much vision she has right now, each doctor says the same thing. "Well she is seeing fairly well there is no doubt about that". Yes right now she is seeing well enough for her to get around and play, but her left eye has now become her better eye and shortly our focus will shift to the right eye in hopes that her vision will improve even more. Our ultimate goal is for her to have good usable vision in both eyes and to maintain low eye pressures.
We discussed options for starting the drops and Diamox again and he agreed that we should resume her medicine schedule as it was going to be about a month until the drainage tube could be opened and allow the valve to start working. I was actually relieved to hear that because although her pressure might be lower right now, it was only temporary. It would start to climb shortly and I wanted to try to get ahead of it with the meds if I could.
I left the office feeling good about how she was doing. There was minimal redness in her eye and no bruising which was nice because last time she had one wicked shiner going on. I would be seeing Dr. Kane the following week so hopefully we would continue to receive good news. Maybe this is the start of our lucky streak! Quick...lets go buy some lottery tickets! Strike while the iron is hot right? ! ? !
Today we had a follow up with Dr. Schubert, the doctor who assisted Dr. Kane in Emily's last surgery. Her eye pressure wasn't tested with the machine, but he did feel her eyes and he can tell if the pressure is high or not just by how soft or firm her eyes feel. So far so good. The left eye still feels soft which is an indication of lower pressure. There was no sign of infection, which was one of our biggest concerns...infections in the eye are BAD...very bad. Her retina was still attached, I didn't know they were concerned about it not being attached so that was surprising for me to hear, but none the less good news. Her optic nerve looked ok, in comparison to how it looked 5 days ago in surgery I am not sure. Cornea and Lens Implant both looked very good and he was encouraged by how she was walking around and "seeing".
I think all her doctors are very surprised by how much vision she has right now, each doctor says the same thing. "Well she is seeing fairly well there is no doubt about that". Yes right now she is seeing well enough for her to get around and play, but her left eye has now become her better eye and shortly our focus will shift to the right eye in hopes that her vision will improve even more. Our ultimate goal is for her to have good usable vision in both eyes and to maintain low eye pressures.
We discussed options for starting the drops and Diamox again and he agreed that we should resume her medicine schedule as it was going to be about a month until the drainage tube could be opened and allow the valve to start working. I was actually relieved to hear that because although her pressure might be lower right now, it was only temporary. It would start to climb shortly and I wanted to try to get ahead of it with the meds if I could.
I left the office feeling good about how she was doing. There was minimal redness in her eye and no bruising which was nice because last time she had one wicked shiner going on. I would be seeing Dr. Kane the following week so hopefully we would continue to receive good news. Maybe this is the start of our lucky streak! Quick...lets go buy some lottery tickets! Strike while the iron is hot right? ! ? !
Wednesday, August 26, 2009
Post Op Pictures
Here are some photos of Emily after her surgery, Sorry I couldn't remove the red eye...this is uploaded from the laptop and I don't have red eye reduction in my photo program.
The Amazing Dr. Kane
Emily 5 Days Post-Op - 22 Months Old
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...
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
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!
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!
Tuesday, August 4, 2009
Fighting For Sight - Emily's Story
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.
~Jennifer
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:
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
Small Changes
A friend asked me last night if Emily's eye looked bigger. At first I thought she was talking about how one eye looks bigger than the other. But then I realized that she meant 'Does her eye look bigger than the last time I saw her'. I tried getting a good look at it but couldn't, she just is so active and doesn't sit still very long anymore so my best guess was to say "yeah, it probably is".
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.
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.
Thursday, July 30, 2009
Two More Mom's with Peter's Kids
Just this past week I was contacted by two more mom's who have a child with Peter's Anomaly. I cannot believe it, it's like so many pieces to this crazy puzzle are falling into place. Both mom's found me on facebook and then read my blog. In doing so they realized that their situations are so similar to mine and none of us are alone anymore.
One mom, Catherine, is from the UK and flys here to the United States to have her son seen by a doctor in Rochester NY. Her son Bobby is 5 months old and had KPros (synthetic corneas) implanted to allow him to see. That was last week, and while she was here she found me on facebook! I can't wait to get to know her and all about her family!
Another mom, Yvonne, is from Florida and also brings her 5 year old son Sam up to Rochester NY to see that very same doctor. He originally had donor transplants like Emily has, but they rejected quickly, so they turned to this doctor (Dr. Aquavella) and their son now has the KPros implants as well. Sam has Peters' Plus, which means he has other health and developmental issues in addition to the corneal problems.
I called and spoke with Yvonne last night for over 3 and 1/2 hours and it was wonderful to talk to another mom who has been in my shoes and can completely relate to EVERYTHING I have been through. We talked and laughed for so long and have so much in common. By the end of the conversation (which was after midnight) I felt like I had known her for years! Yvonne has a blog as well and I hope you will check it out and learn about her little boy and his struggle. Her blog address is:
http://myreallifebyyvonne.blogspot.com/
I am so excited that I'm making these connections, it's so important to me and I'm sure they feel the same way too. We know exactly where each other has been and how each other is feeling. This is going to be a rough ride, but we are here for each other now and that is a blessing!
One mom, Catherine, is from the UK and flys here to the United States to have her son seen by a doctor in Rochester NY. Her son Bobby is 5 months old and had KPros (synthetic corneas) implanted to allow him to see. That was last week, and while she was here she found me on facebook! I can't wait to get to know her and all about her family!
Another mom, Yvonne, is from Florida and also brings her 5 year old son Sam up to Rochester NY to see that very same doctor. He originally had donor transplants like Emily has, but they rejected quickly, so they turned to this doctor (Dr. Aquavella) and their son now has the KPros implants as well. Sam has Peters' Plus, which means he has other health and developmental issues in addition to the corneal problems.
I called and spoke with Yvonne last night for over 3 and 1/2 hours and it was wonderful to talk to another mom who has been in my shoes and can completely relate to EVERYTHING I have been through. We talked and laughed for so long and have so much in common. By the end of the conversation (which was after midnight) I felt like I had known her for years! Yvonne has a blog as well and I hope you will check it out and learn about her little boy and his struggle. Her blog address is:
http://myreallifebyyvonne.blogspot.com/
I am so excited that I'm making these connections, it's so important to me and I'm sure they feel the same way too. We know exactly where each other has been and how each other is feeling. This is going to be a rough ride, but we are here for each other now and that is a blessing!
Appointment With Dr.Zaidman 7/27/09
Emily had a doctors appointment this past Monday with Dr. Zaidman. I was nervous about it because after her allergic reaction to the new eye drops I wasn't sure what he was going to say or do. After briefly meeting with a resident doctor and going over her medications and the specifics of the reaction she had, we were moved into the back waiting area. Once Dr. Zaidman called us into an exam room he brought another resident doctor in with him. She had never seen Emily before and he was telling her about her latest surgery and how he hopes to do a partial transplant on her right eye to replace a few layers of the cornea where scar tissue has formed.
She is now 7.5 weeks post-op and after examining her, he told me that the cornea looks very good and the lens implant is still in a good position. We talked about her reaction to the new medicine and he said that if Dr. Kane really felt it was necessary for her to have the surgery to implant the second tube, then he would have to go with what he felt was best. But he was hoping to try one more medication before resorting to the surgery...(the Pilocarpine that she is now on).
The resident was curious about how well she could see, and at this point Emily had already gotten down off my lap and was walking around the room. What Dr. Z said next hit me like a ton of bricks..."well obviously she is seeing, and she is doing remarkably well considering what she has been through". My heart just about jumped out of my chest! For him to say that really made me feel as though he was truly impressed with how well she is doing and how far she has come. If he thinks she's doing "remarkably well"...that's music to my ears. Despite the cornea rejecting and the constant battle with Glaucoma, she is still prevailing..she is a fighter for sure! I will never give up on her and I know she will never give up on herself. For a 21 month old little girl, she sure has more strength than any adult I know...
She has become a little bit "sassy" over the last couple of weeks, since she learned how to say NO! She had already (on her own) learned how to cross her arms when she is mad or upset and that combined with 'NO' is just setting the stage for her to tell everyone exactly how it is! She will not settle...she will not back down...she will fight for what she wants until she gets it. She WILL be able to see, she WILL do everything a child with 'normal' vision can do...she will prove everyone wrong...and in the process teach us as adults a very valuable lesson in courage.
I love you baby girl....you are such an inspiration!
She is now 7.5 weeks post-op and after examining her, he told me that the cornea looks very good and the lens implant is still in a good position. We talked about her reaction to the new medicine and he said that if Dr. Kane really felt it was necessary for her to have the surgery to implant the second tube, then he would have to go with what he felt was best. But he was hoping to try one more medication before resorting to the surgery...(the Pilocarpine that she is now on).
The resident was curious about how well she could see, and at this point Emily had already gotten down off my lap and was walking around the room. What Dr. Z said next hit me like a ton of bricks..."well obviously she is seeing, and she is doing remarkably well considering what she has been through". My heart just about jumped out of my chest! For him to say that really made me feel as though he was truly impressed with how well she is doing and how far she has come. If he thinks she's doing "remarkably well"...that's music to my ears. Despite the cornea rejecting and the constant battle with Glaucoma, she is still prevailing..she is a fighter for sure! I will never give up on her and I know she will never give up on herself. For a 21 month old little girl, she sure has more strength than any adult I know...
She has become a little bit "sassy" over the last couple of weeks, since she learned how to say NO! She had already (on her own) learned how to cross her arms when she is mad or upset and that combined with 'NO' is just setting the stage for her to tell everyone exactly how it is! She will not settle...she will not back down...she will fight for what she wants until she gets it. She WILL be able to see, she WILL do everything a child with 'normal' vision can do...she will prove everyone wrong...and in the process teach us as adults a very valuable lesson in courage.
I love you baby girl....you are such an inspiration!
Wednesday, July 29, 2009
Trying Yet ANOTHER Medication
I called Dr. Kane yesterday to try and find out if they had any luck scheduling Emily's Glaucoma surgery, expecting to hear "yes, it will be Aug. ____. Instead Dr. Kane told me he has consulted with Dr. Zaidman again and he wants to try another medication before doing the surgery. I guess thats a good thing, but I just feel like it's delaying the inevitable again. Time is something she doesn't have, and neither do I. School is starting again in about a month and I know all of this is going to land in my lap just as the boys start getting into their school routines. It's bad enough that she has been scheduled for surgery to take the transplant stitches out on Sept 2nd, the day before Matthew starts school. I want to reschedule it so bad because I want to spend that LAST day of summer with the boys and really have fun with them. No one consulted me on the date and I just feel like at this point does one more week really matter? They've been in already for almost 2 months...I might just call tomorrow and tell them that I have to change it. My family needs me that day.
Anyway, Dr. Kane called in Pilocarpine, which she has already been on once before. But this time it's only 1% instead of 2%...not sure what the difference is, but its too bad we can't use the 2% because I already have a whole bottle...
More money out the window...
We have to give this to her 4 times a day (in addition to everything else) and he wants to see her on Monday to check her pressure. God willing this will work, we can postpone the surgery...but I doubt it.
Anyway, Dr. Kane called in Pilocarpine, which she has already been on once before. But this time it's only 1% instead of 2%...not sure what the difference is, but its too bad we can't use the 2% because I already have a whole bottle...
More money out the window...
We have to give this to her 4 times a day (in addition to everything else) and he wants to see her on Monday to check her pressure. God willing this will work, we can postpone the surgery...but I doubt it.
Still Searching For Help
A month or so ago, our social worker started checking into a program or 'fund' that might help reduce the cost of Emily's prescription eye medications. I spoke to her this morning and not one single medication qualifies for or is part of the program. What the hell??? Can't we catch any kind of break here?
I've exhausted just about every avenue that I can think of for financial assistance for Emily's medical needs/expenses. We don't qualify for reason X, Y or Z....
My next (and probably last) option is to look into the Catastrophic Illness in Children Relief Fund.
http://www.state.nj.us/humanservices/cicrf/home/index.html
What is the Catastrophic Illness in Children Relief Fund?
The Catastrophic Illness in Children Relief Fund is a financial assistance program for New Jersey Families whose children have an illness or condition otherwise uncovered by insurance, State or Federal programs, or other source, such as fundraising. The Fund is intended to assist in preserving a family's ability to cope with the responsibilities which accompany a child's significant health problems.
To be Eligible, In any prior, consecutive, 12 month period, dating back to 1988, eligible expenses must exceed 10% of the family's income.
In speaking this morning with Andrea, our early intervention district coordinator, she advised me to look into this as an option for Emily. Now that we have over 12 months in previous medical expenses for her, we can apply. But I'm sure we'll have to furnish a world of paperwork, receipts, cancelled checks, bills etc...to prove what we've spent out of pocket in those 12 months. It won't be that difficult since I have everything organized fairly well, but it's just more red tape we're going to have to cut through. And who knows how quickly we'd get reimbursed if we did qualify and they chose us. It could be MONTHS before we get any answer or see any kind of money...and that's if we meet the minimum 10% threshold.
The one good thing is that we can apply for every 12 consecutive months since you are applying for reimbursement of what you've already paid, so we will shortly be able to apply for the last 2 years. I called today to request the application so we'll see what happens.
I've exhausted just about every avenue that I can think of for financial assistance for Emily's medical needs/expenses. We don't qualify for reason X, Y or Z....
My next (and probably last) option is to look into the Catastrophic Illness in Children Relief Fund.
http://www.state.nj.us/humanservices/cicrf/home/index.html
What is the Catastrophic Illness in Children Relief Fund?
The Catastrophic Illness in Children Relief Fund is a financial assistance program for New Jersey Families whose children have an illness or condition otherwise uncovered by insurance, State or Federal programs, or other source, such as fundraising. The Fund is intended to assist in preserving a family's ability to cope with the responsibilities which accompany a child's significant health problems.
To be Eligible, In any prior, consecutive, 12 month period, dating back to 1988, eligible expenses must exceed 10% of the family's income.
In speaking this morning with Andrea, our early intervention district coordinator, she advised me to look into this as an option for Emily. Now that we have over 12 months in previous medical expenses for her, we can apply. But I'm sure we'll have to furnish a world of paperwork, receipts, cancelled checks, bills etc...to prove what we've spent out of pocket in those 12 months. It won't be that difficult since I have everything organized fairly well, but it's just more red tape we're going to have to cut through. And who knows how quickly we'd get reimbursed if we did qualify and they chose us. It could be MONTHS before we get any answer or see any kind of money...and that's if we meet the minimum 10% threshold.
The one good thing is that we can apply for every 12 consecutive months since you are applying for reimbursement of what you've already paid, so we will shortly be able to apply for the last 2 years. I called today to request the application so we'll see what happens.
Thursday, July 23, 2009
My Breaking Point
Where is my breaking point? I don’t know if I’ve been there already or if it’s still out there somewhere. Maybe I am there right now, who knows. I’m tired of all the twist and turns of this roller coaster and I want to get off the ride. I’ve run out of tickets so why can’t my turn be over? Just when you think you have gotten to the point where it’s going to slow down and maybe even come to a stop, the track either drops out from underneath you or you get whiplash from the sharp turn it takes.
I am trying to be strong. I am TRYING to be strong. Strong for my daughter, strong for my family, strong for my husband…but what happens when I need someone to be strong for me? I can only be strong for them when I, myself am strong. Right now I feel anything but strong. I feel like I am falling apart.
Everyday is a struggle. I know everyone has bad days, but I feel like I have more bad than good lately. Normally I am pretty even keeled about Emily’s condition, only getting really emotional when something major is happening like a surgery or EUA. Today I’ve broken down multiple times and found myself asking why I can’t seem to keep it together. I still haven’t figured out the answer to that.
I am so tired of seeing her suffer. She has been through so much and I just can’t stand to think about what her future holds.
Maybe I've been to the brink of my breaking point before. Are we allowed to reach that point and then recover from it only to start heading towards it again? Like a rollercoaster... you get to the bottom of the hill only to start climbing towards the top of the next one...
Allergic Reaction To New Eye Drops
Before we left for vacation, I got a phone call from Dr. Zaidman’s office saying that he wanted her to start a new eye drop for the Glaucoma, something called Phospholine Iodide. Lets just say we went to the ends of the earth to find this medicine and even had it shipped overnight from the pharmacy at home to where we were staying at the shore. Today is the third day she’s been using it and I recognized the signs almost right away… she was having an allergic reaction to it. Her eyes are slightly bloodshot, her eyelids are red and puffy, she has been unhappy for most of the past 3 days and the only time she really is not crying or cranky is when she is sleeping. She slept all of Tuesday afternoon and then was up two or three times in the middle of the night crying. Yesterday she took a morning nap and fell asleep at the beach for at least an hour or more. That is just not like her.
This is exactly how she acted when she had that reaction to the ointment we had mixed up at the compounding pharmacy last year sometime. I finally called Dr. Zaidman and Dr. Kane this afternoon and they both agreed that we should stop giving her the drops. All the shit we went through to get that stupid medicine and she’s allergic to it???? It figures. But now the reality of her needing the surgery for the second valve is at the forefront of my mind again. Not that it ever really left, but at least for a little while I wasn’t really thinking about it as much.
We started this fight a year ago…we were on vacation anticipating that Emily would need surgery to implant a valve in her eyes to control her eye pressure. Six surgeries and 2 EUA’s later, the Glaucoma is still winning. It took her vision once already by causing the rejection of her first cornea transplant in her left eye. Now that she has had a second transplant and a new chance to see, we hope that we can finally find the right combination of treatments for her and once and for all get her pressure lowered and keep it there. Here we are one year later, again on vacation trying to enjoy time together as a family. Instead of being able to shut out all of what is happening to us/her, I have spent most of my vacation agonizing over yet another 3 surgeries she will need to have in the coming months. By the time she is 2 years old, she will have had 15 major surgeries. I just can’t seem to get that number out of my head.
Sunday, July 12, 2009
Finding New Connections
Within the last week I have been contacted by a few other mom's who are in similar situations as I am. Just yesterday I received a friend request on Facebook from a mom who found me through a Congenital Glaucoma group. Not only does her son have Glaucoma, but she also lives in NJ and sees the same doctors as Emily does! Her son is 2 years old and is waiting for a cornea transplant with Dr. Zaidman. Plus, after she had already found me on Facebook, she was told about an article in the paper about a little girl with eye problems. She read it and realized that it was Emmy's story! I had goosebumps reading her email as she described all the similarities between her son and Emmy, and how she came to find me. Truly amazing! I'm sure her and I will form a great friendship, we are already connected in such a powerful way.
Then last night I received an email from another mom who said she sat and read this entire blog! Her daughter also has a visual impairment and she wanted to let me know I am not alone. She gave me the address to her blog as well. I am so touched by all these new connections with other parents, this was the reason I started this blog in the first place. I had tears in my eyes as I read some of the posts...I truly wasn't alone. There are other people out there who are going through the exact same thing as I am. They are finding me and I am finding them.
Katie's blog address is:
Maddy News - http://visualimpairmentsmaddy.blogspot.com/
In reading her blog I also came across another blog about a baby struggling with a visual impairment. I started to scan through some of the posts and found out that this little girl, named Lilah also has Peter's Anomaly. I was again in tears reading some of the posts.
Her blog address is:
Lilah's Hope - http://lilahhope.blogspot.com/
Please check them out, these families are struggling in the same ways we are and they need our support too.
Then last night I received an email from another mom who said she sat and read this entire blog! Her daughter also has a visual impairment and she wanted to let me know I am not alone. She gave me the address to her blog as well. I am so touched by all these new connections with other parents, this was the reason I started this blog in the first place. I had tears in my eyes as I read some of the posts...I truly wasn't alone. There are other people out there who are going through the exact same thing as I am. They are finding me and I am finding them.
Katie's blog address is:
Maddy News - http://visualimpairmentsmaddy.blogspot.com/
In reading her blog I also came across another blog about a baby struggling with a visual impairment. I started to scan through some of the posts and found out that this little girl, named Lilah also has Peter's Anomaly. I was again in tears reading some of the posts.
Her blog address is:
Lilah's Hope - http://lilahhope.blogspot.com/
Please check them out, these families are struggling in the same ways we are and they need our support too.
Saturday, July 11, 2009
Eye Drop Schedule
As it stands right now, this is Emily's daily eye drop schedule:
Sadly each of these medications only come in a small bottle and have to be refilled every 3 to 4 weeks...to tune of $50 each, that adds up pretty quickly.
- Timolol - Twice a day in both eyes (for Glaucoma)
- FML - Twice a day in Right eye only - (Steroid to prevent transplant rejection)
- Iquix - Once a day in Right eye, Four times a day in Left eye (Antibiotic)
- Durezol - Six times a day in Left eye only (Steroid to prevent transplant rejection)
- Xalantan - Once a day (at night) in both eyes (for Glaucoma)
- Cyclopentolate Hydrochloride - Once a day in Right eye only (to dilate pupil)
Sadly each of these medications only come in a small bottle and have to be refilled every 3 to 4 weeks...to tune of $50 each, that adds up pretty quickly.
5 Weeks Post-Op
We are now 5 weeks out from Emily's last cornea surgery and so far so good. We had our regular appointment with Dr. Zaidman yesterday. We sat in the waiting room for about 2 1/2 hours before we were seen, which isn't a surprise, but we haven't waited that long in quite a while. I know it's worth the wait to see him and have him make sure everything looks ok, but with Emmy walking now it's so hard to keep her occupied for that long. Next time I'm going to pack a bag full of really noisy toys and maybe that will get us out of the waiting room faster! (yeah right). I have to remind myself that Cornea Transplants and Glaucoma are not common in babies or children. I am usually the only one there with a baby or young child, everyone else is probably at least over 60. We are the rare case, the exception to the rule.
We were seen by one of the resident doctors first, she didn't do much other than look in her eyes with a light and go over her medications...then we were shuffled into the back of the office with the other 6 or 7 people already waiting there. Because of her stroller, I had to stand in the hallway and chase her around...ugh.
Finally it was our turn and Dr. Zaidman came in and examined her. He could see that her left cornea was very clear and looked great. Her lens implant also looked very good. We talked about her appointment with Dr. Kane just 2 days before and he agreed that if he felt that implanting a second valve would be the best option for her right now that it was his call and he was ok with it. He did mention that he would email Dr. Kane and ask him if using either Pilocarpine, Phosphone Iodide or Azopt in addition to the other two Glaucoma drops she is already on would be an option. Apparently some doctors don't like to use Azopt when a patient has had a cornea transplant, but he felt it was worth mentioning to him. For right now none of her medications have changed and her eye drop schedule will stay the same. I guess that's good since it's so hard to keep track of everything as it is.
We also talked about timing of the surgery since he wants to bring her in possibly in August to remove the stitches. That was all left up in the air for right now and will depend on when Dr. Kane wants to do the Glaucoma surgery. We scheduled the next appointment for the Monday after we come back from vacation, so I will get a 2 week reprieve from her doctors visits. Unfortunately the rest of my summer will be spent in doctors offices and hospitals for the second year in a row...
We were seen by one of the resident doctors first, she didn't do much other than look in her eyes with a light and go over her medications...then we were shuffled into the back of the office with the other 6 or 7 people already waiting there. Because of her stroller, I had to stand in the hallway and chase her around...ugh.
Finally it was our turn and Dr. Zaidman came in and examined her. He could see that her left cornea was very clear and looked great. Her lens implant also looked very good. We talked about her appointment with Dr. Kane just 2 days before and he agreed that if he felt that implanting a second valve would be the best option for her right now that it was his call and he was ok with it. He did mention that he would email Dr. Kane and ask him if using either Pilocarpine, Phosphone Iodide or Azopt in addition to the other two Glaucoma drops she is already on would be an option. Apparently some doctors don't like to use Azopt when a patient has had a cornea transplant, but he felt it was worth mentioning to him. For right now none of her medications have changed and her eye drop schedule will stay the same. I guess that's good since it's so hard to keep track of everything as it is.
We also talked about timing of the surgery since he wants to bring her in possibly in August to remove the stitches. That was all left up in the air for right now and will depend on when Dr. Kane wants to do the Glaucoma surgery. We scheduled the next appointment for the Monday after we come back from vacation, so I will get a 2 week reprieve from her doctors visits. Unfortunately the rest of my summer will be spent in doctors offices and hospitals for the second year in a row...
Wednesday, July 8, 2009
No End In Sight
Today I took Emily back into Manhattan to see Dr. Kane for the first time since her cornea transplant. He was very happy with the way her cornea looked, he said it was very clear and he could see her retina and optic nerve well. Her eye pressure was 26 in both eyes, which is just ok... not great...but not completely terrible either. He's not changing any of her medication, but we talked about following through with the plan to insert another valve in the left eye.
The one valve in the left eye is not enough to control the fluid build up, so she will need to have a second one implanted to help maintain a lower pressure. This was supposed to happen months ago but that plan had to be postponed because of the perforation she had in her cornea. Dr. Kane said that he could see her optic nerve and it would benefit from having lower eye pressures. He didn't say that there was damage, but the fact that he said he could see it and it would benefit from the lower pressure leads me to believe he saw something he didn't like. That really scares me. Once damage is done, it is not reversible. If she loses vision in that eye because of it, she can't get it back.
He was encouraged by where the lens implant was placed, it allows her good vision at a close distance. It also opens up alot of possibilities for treatment for her because now there is plenty of room to place the new valve behind the lens, keeping it away from the cornea graft. The further away the better the chance it will not compromise it. Dr. Kane also mentioned that he is considering taking out the old valve and replacing it with one that will work more effectively. He suggested doing the surgery fairly soon, but how soon was not decided. We are going away next Friday for a week at the shore, so it will wait at least until we get back. But that feels way too familiar. This exact scenario happened last July when we were scheduling her first Glaucoma surgery. We went down the shore for a week and came home to a surprise surgery 2 days later. I really don't want to stress about that the entire time we are away. Can't I do anything for just a few days that doesn't require me to think about any of this??? I deserve a vacation from this too you know.
Dr. Kane sent an email to Dr. Zaidman while I was in his office. He wants to get his opinion on how soon he would feel comfortable allowing her to have another surgery. It's bad enough that she will be going back into the operating room in August to have the stitches removed from the cornea transplant, but now she'll have to have the Glaucoma surgery too. And it's a two step process so about a month later she'll have to go in AGAIN so Dr. Kane can open the drainage tube on the new valve. Lets count them....That's 1...2...3 surgeries that will need to take place within the next 2 months. That means that by the time she is 2 years old she will have had at LEAST 15 surgeries. And that's not including any further exams under anesthesia she might need. That total will be coming close to 2o by October.
With 3 more impending surgeries, I just can't help but feel discouraged today. I know that her cornea looks good and so far is doing very well. And I know the valve needs to be replaced to better control her Glaucoma. And I already knew that these surgeries would be coming up. But when you look at the big picture and realize what she has been through already and what she still has to go through, it is just overwhelming. She doesn't deserve this.
A good friend asked me today if there was ever going to be an end to her surgeries. Sadly we will never be able to answer that question.
The one valve in the left eye is not enough to control the fluid build up, so she will need to have a second one implanted to help maintain a lower pressure. This was supposed to happen months ago but that plan had to be postponed because of the perforation she had in her cornea. Dr. Kane said that he could see her optic nerve and it would benefit from having lower eye pressures. He didn't say that there was damage, but the fact that he said he could see it and it would benefit from the lower pressure leads me to believe he saw something he didn't like. That really scares me. Once damage is done, it is not reversible. If she loses vision in that eye because of it, she can't get it back.
He was encouraged by where the lens implant was placed, it allows her good vision at a close distance. It also opens up alot of possibilities for treatment for her because now there is plenty of room to place the new valve behind the lens, keeping it away from the cornea graft. The further away the better the chance it will not compromise it. Dr. Kane also mentioned that he is considering taking out the old valve and replacing it with one that will work more effectively. He suggested doing the surgery fairly soon, but how soon was not decided. We are going away next Friday for a week at the shore, so it will wait at least until we get back. But that feels way too familiar. This exact scenario happened last July when we were scheduling her first Glaucoma surgery. We went down the shore for a week and came home to a surprise surgery 2 days later. I really don't want to stress about that the entire time we are away. Can't I do anything for just a few days that doesn't require me to think about any of this??? I deserve a vacation from this too you know.
Dr. Kane sent an email to Dr. Zaidman while I was in his office. He wants to get his opinion on how soon he would feel comfortable allowing her to have another surgery. It's bad enough that she will be going back into the operating room in August to have the stitches removed from the cornea transplant, but now she'll have to have the Glaucoma surgery too. And it's a two step process so about a month later she'll have to go in AGAIN so Dr. Kane can open the drainage tube on the new valve. Lets count them....That's 1...2...3 surgeries that will need to take place within the next 2 months. That means that by the time she is 2 years old she will have had at LEAST 15 surgeries. And that's not including any further exams under anesthesia she might need. That total will be coming close to 2o by October.
With 3 more impending surgeries, I just can't help but feel discouraged today. I know that her cornea looks good and so far is doing very well. And I know the valve needs to be replaced to better control her Glaucoma. And I already knew that these surgeries would be coming up. But when you look at the big picture and realize what she has been through already and what she still has to go through, it is just overwhelming. She doesn't deserve this.
A good friend asked me today if there was ever going to be an end to her surgeries. Sadly we will never be able to answer that question.
Sunday, July 5, 2009
New Drug To Prevent Corneal Rejection
I found this article online and thought it was really interesting. I'm not sure if it would be something Emily would be able to benefit from at this point, but worth mentioning. I wish she could be part of the trial study.
LUMITECT (LX201) The only drug to prevent corneal transplant rejection is ready for phase 3 trial
Cornea is generally a tissue that is not vascularized, does not contain blood vessels and thus is less prone to acute rejection, the rate of rejection reactions in high risk corneal transplant patients is in the range of 50 percent over one year.
Lux Biosciences today announced the completion of enrollment in the company’s phase 3 LUCIDA (LUx Corneal Transplant Implant Development and Advancement of Therapy) clinical trial program for LUMITECT™ (LX201).
LUMITECT is a silicone matrix ocular implant that steadily releases therapeutic doses of cyclosporine A locally to the eye for one year. LUMITECT is implanted under the eyelid into the subconjunctival space (the area beneath the transparent tissue covering the white of the eye) in a minimally invasive procedure.
Lux Biosciences is evaluating the implant clinically for the prevention of rejection in corneal transplantation. LUMITECT has received Orphan Drug status in both the United States and Europe, and Fast Track status in the United States.
Ulrich Grau, Ph.D., President and Chief Executive Officer of Lux Biosciences says that they are very gratified to have reached this important developmental milestone for LUMITECT, a therapeutic product candidate that has the potential to address a major medical need for which there are no currently approved treatments.
According to the official report from Lux Biosciences, data from the first of two pivotal LUCIDA studies is expected later in 2009, while data from the second study would become available in the first half of 2010.
At present approximately 32,000 corneas are transplanted each year in the United States and an additional 22,000 in Europe.
Source: Business Wire
* * * Here is the original article: http://eye.taragana.net/archive/lumitect%e2%84%a2-lx201-the-only-drug-to-prevent-corneal-transplant-rejection-is-ready-for-phase-3-trial/#more-1316
LUMITECT (LX201) The only drug to prevent corneal transplant rejection is ready for phase 3 trial
Cornea is generally a tissue that is not vascularized, does not contain blood vessels and thus is less prone to acute rejection, the rate of rejection reactions in high risk corneal transplant patients is in the range of 50 percent over one year.
Lux Biosciences today announced the completion of enrollment in the company’s phase 3 LUCIDA (LUx Corneal Transplant Implant Development and Advancement of Therapy) clinical trial program for LUMITECT™ (LX201).
LUMITECT is a silicone matrix ocular implant that steadily releases therapeutic doses of cyclosporine A locally to the eye for one year. LUMITECT is implanted under the eyelid into the subconjunctival space (the area beneath the transparent tissue covering the white of the eye) in a minimally invasive procedure.
Lux Biosciences is evaluating the implant clinically for the prevention of rejection in corneal transplantation. LUMITECT has received Orphan Drug status in both the United States and Europe, and Fast Track status in the United States.
Ulrich Grau, Ph.D., President and Chief Executive Officer of Lux Biosciences says that they are very gratified to have reached this important developmental milestone for LUMITECT, a therapeutic product candidate that has the potential to address a major medical need for which there are no currently approved treatments.
According to the official report from Lux Biosciences, data from the first of two pivotal LUCIDA studies is expected later in 2009, while data from the second study would become available in the first half of 2010.
At present approximately 32,000 corneas are transplanted each year in the United States and an additional 22,000 in Europe.
Source: Business Wire
* * * Here is the original article: http://eye.taragana.net/archive/lumitect%e2%84%a2-lx201-the-only-drug-to-prevent-corneal-transplant-rejection-is-ready-for-phase-3-trial/#more-1316
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