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.


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.

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...