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...
Wednesday, November 18, 2009
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...
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