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".

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...