Last Wednesday I noticed Emily's right eye seemed to be more bloodshot than it usually is. I mentioned it to Jason and he didn't really notice much of a difference...but I knew something was wrong. Two days later, on a day that Emily already had a scheduled appointment with Dr. Zaidman, she woke up and the second I tried to put drops in her eyes I immediately felt sick to my stomach. Flashback to Oct. 2008 when she had the corneal ulcer and infection in her right eye after she scratched it...It looked exactly the same. Are you kidding me???? What the hell happened????
I got the kids to school (late) and rushed off to Dr. Zaidman's office. I actually got there 45 minutes early because I didn't want to waste any time and thought if he wasn't too backed up he could take us in when he had an opening. WRONG....Do not show up early and expect to be seen even on time...I waited for over 2 hours. Emily ate every single snack I had with me and I was almost ready to go take a walk. It was about 95 degrees in there and I felt like between my nerves and the heat that I was going to pass out. I tried to keep my mind off of how bad her eye looked, but just trying to talk to Jason over the phone and explain what was going on, I started to get upset. How could this happen to her again?? And the worst part was that I saw something wrong with her left eye as well, it literally looks like someone peeled a layer of her cornea off. The right eye was much worse, looking like a crater in the center of her eye. I knew there was an infection...ugh. The part that irritates me the most is that Dr. Zaidman had kept her on the Iquix ever since her last infection like this, she was on it only once a day up until her surgery in November. But Dr. Kane took her off of it a few weeks ago. My gut told me not to stop it, but I was trusting the doctors. I keep thinking that had I not taken her off of that antibiotic, this wouldn't have happened. ALWAYS FOLLOW YOUR GUT! I try to as much as possible, but sometimes you second guess yourself.
I cannot put into words how twisted my insides felt when I looked at her eyes. I felt sick to my stomach with fear and was probably pretty close to having an anxiety attack. Finally when the one resident doctor called her in I was able to explain what I saw and he put drops in her eyes to test for a scratch. Her eyes lit up like a Christmas Tree. Both eyes, stained green in the center...that is not good. When you think of a scratch, most people visualize a thin straight line. When you are talking about a scratched cornea....its more like a scrape. It's not a line, its a large patch of the front of her eye that appears to be missing. It's not pretty to look at, in fact it really made me cringe when I saw it. Once again the stupid residents tried taking her pressure and because they use the stupid tonal pen it never works. Idiots...they have no idea how to work with a child.
Anyway, Dr. Z came in and did not like what he saw. She had been doing so well and now this! He couldn't say for sure that there was an infection, so he took a culture to make sure. But there was definitely scratches on both eyes. JUST GREAT! Hasn't this poor girl been through enough? Why did this happen? How did this happen? There is no answer. She could have rubbed her eyes too much, bumped her eye with a toy, scratched it with her fingernail...etc. We will never know.
So...we treat it as if there was an infection. Antibiotic ointment every 3 hours around the clock...yes we have to wake her up during the night to give it to her. She is no longer on the Durezol in the right eye, apparently he thinks there is no reason for it anymore and we are dropping the dosage in the left eye down to once a day. The weekend was exhausting. I had my cell phone alarm set for every 3 hours to remind us when she was due for it again. By Monday we were out of the ointment and tired as hell. She fared well though, only waking up enough to let us put it in and then going right back to sleep, not once has she given us a hard time. She is just amazing, taking this whole thing so well. But she doesn't know any better.
On Monday I took her back and the results were positive for infection in the right eye but not the left. Her eyes did look better, but Dr. Z wanted to add back in the Iquix so help speed the healing process. We are afraid that the scratch is going to cause damage to her beautifully clear cornea and that would be disastrous. He lowered the frequency of the ointment to every 4 hours, but still around the clock. It's been almost a week and her eyes look better, but not 100% yet. Hopefully I will get better news tomorrow at her next appointment.
As long as the infection stays away, this should not affect her transplant on Feb 25th. She can't afford to wait much longer, I can see she is losing some control over that eye. Which means she is losing vision too. I just hope and pray for everything to heal quickly without any additional complications.
And as for me...I'm handling this pretty well, with the exception of the day it happened. But by all means, pour me another glass of wine.
I will update again after tomorrow.
Thursday, January 14, 2010
Pressure Elevated in Left Eye
After a few weeks of no glaucoma meds, sadly Emily is back on the Timolol and Xalatan. Her pressure is up in the left eye. It went from about 18 to 26 in a weeks time. Dr. Kane said it might have something to do with the valve acclimating itself to her eye and that the pressure increase might be temporary. But for now, she's back on the meds.
It was a nice break...the only meds she was on was the antibiotic and steroid. It was the least amount of eye drops she had been on in the last 2 years. But I knew it wouldn't last for long. About 4 days after she started the drops again, her pressure was back down to 18, so at least we know the meds are working.
Her right eye hasn't been tested too much with the instrument, but Dr. Kane feels how hard or soft her eye is to judge the pressure and so far so good. Fingers are crossed that this will be a long term fix for her. I can take giving her the drops, I can't take more surgery. But we know she'll have at least one more...the cornea transplant again in her right eye at the end of February. As long as the pressure remains low...
It was a nice break...the only meds she was on was the antibiotic and steroid. It was the least amount of eye drops she had been on in the last 2 years. But I knew it wouldn't last for long. About 4 days after she started the drops again, her pressure was back down to 18, so at least we know the meds are working.
Her right eye hasn't been tested too much with the instrument, but Dr. Kane feels how hard or soft her eye is to judge the pressure and so far so good. Fingers are crossed that this will be a long term fix for her. I can take giving her the drops, I can't take more surgery. But we know she'll have at least one more...the cornea transplant again in her right eye at the end of February. As long as the pressure remains low...
Squishy Eye
Although Emily hasn't been on any medication for the pressure, Dr. Kane showed me how to press on her right eye and force the fluid to flow through the new channel he created. This will help maintain the lower pressure and possibly prevent scar tissue from forming in the channel. We've dubbed this maneuver "squishy eye" since that's basically what we are doing. I have to press on the lower portion of her right eye for 10 seconds. I am so afraid of pushing too hard, but at the same time I don't want to not push hard enough. When I asked Dr. Kane about it, he said I can press alot harder than I think. That doesn't really help me much!
Emily is ok with us doing it, but she is catching on. If we tell her we need to do "squishy eye" she knows what is happening beforehand. That helps to alleviate some of her crying. We try to make her laugh by counting out loud and being silly while we are doing it, otherwise she'd be freaking out. Sometimes she even tries to count with us, but she only says four and five over and over, its so cute.
It started out as once a day but now we are up to 4 times a day. I don't mind doing it, but it's the amount of force I am using that I am worried about. I don't want to hurt her.
Emily is ok with us doing it, but she is catching on. If we tell her we need to do "squishy eye" she knows what is happening beforehand. That helps to alleviate some of her crying. We try to make her laugh by counting out loud and being silly while we are doing it, otherwise she'd be freaking out. Sometimes she even tries to count with us, but she only says four and five over and over, its so cute.
It started out as once a day but now we are up to 4 times a day. I don't mind doing it, but it's the amount of force I am using that I am worried about. I don't want to hurt her.
Post Op Follow Ups
In the weeks following her surgery, Emily was seen by Dr. Kane at least twice a week. She was healing nicely and her pressures seemed to be remaining at a safe level. I was holding my breath each time I would take her into the city, just waiting to hear that all is well. Because of the danger of her right eye pressure being too low, she needed to be seen frequently. I have to say that I am thoroughly impressed with Dr. Kane's commitment to his patients. Emily needed to be seen, but he was not going to be in the office for the Thanksgiving weekend. So he invited me up to his house in upstate NY so he could examine her, he even offered to give us lunch! I felt honored and privileged to know that he cared that much about Emily to invite us into his home. The day after Thanksgiving, Emily and I took the 2 hour drive up into NY. His home was tucked away up in the mountains...a far cry from the busy streets of Manhattan. It was well worth the trip to know that her pressures were ok.
What an amazing doctor, I honestly feel like part of his family now. Thank you Dr. Kane for truly caring about Emily, we love you!
What an amazing doctor, I honestly feel like part of his family now. Thank you Dr. Kane for truly caring about Emily, we love you!
Thursday, November 19, 2009
Nov. 19, 2009 - Surgery Day
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".
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".
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
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