Friday, August 3, 2012

Surgery & Post Op

Wow, the last 24 hours is such a blur.  I hope I can remember everything I want to share!

The night before surgery was a rough one for me.  I am so grateful to have a bed and the Ronald McDonald House, but man are they uncomfortable!  I got roughly three hours of sleep that night.  Something about sharing a twin air mattress with a one year old that makes for a terrible night's sleep!

Makayla slept pretty good, but couldn't eat that morning, due to her surgery, so she was extremely cranky, so I headed to the hospital early in hopes that the new surroundings would be enough of a distraction to keep her pleasant. 

It's a good thing we got there early, because on our way in to the hospital, there was a Indy Car sitting out front and lots of important looking people.  I paused for a minute to see what was going on, since my husband is a big race fan, and before I could even take it all in, they invited Makayla to sit in the race car and we got to meet one of Indy Car's drivers, Robbie Buhl, who autographed a hat for Makayla.  He was there are part of the Racing for Kids program.

While all this was going on, I got to talk to a nice woman from the hospital noted that we were from California, and told me about all the different places all over the world that patients come from, just to see Dr. Hertle, some as far as Bangladesh and Taiwan.  Yup, that is why we came too.

I found all of that very exciting, but Makayla was a less enthusiastic because of her empty tummy.  Once we got into admitting and to our room, things moved very quickly.  Dr. Hertle came in to see us, and answered all of our last minute questions. 

I'm not sure if he just had great notes from our last visit, but I felt like he really remembered everything about our visit in April and was excited to see my little girl again.  After visiting with all the doctors and nurses that would be a part of her surgery, a very nice doctor took her in his arms, along with her favorite stuffed animal, Violet, and back into surgery.

It must have been all the friendly doctors and nurses, but I was remarkably calm for the first hour and a half of her surgery...after that the anxiety kicked in.  I stress-ate a slice of sausage pizza, and two bags of peanut M&M's before Dr. Hertle came out and told me that everything went beautifully.  He sat with me for a while and answered all of my questions.  He said that there is only a five to ten percent chance that Makayla will ever need another surgery like this.

While Makayla was under, they also did her ERG.  As we expected it confirmed the hypopigmentation in her retina.  Along with her transillumination and nystagmus, it indicates that she has albinism just as Dr. Hertle and Dr. Alcorn (our pediatric ophthalmologist at Lucile Packard Children's Hospital at Stanford, back home) expected that it would confirm.  The ERG also confirmed that everything else about her retina is normal and healthy.  Dr. Herlte, says that the hypopigmination and transillumination are mild, which is good news.

About two hours after they took her away to surgery, I was able to join her in recovery.  She was still very groggy from the medicine, and just wanted to snuggle.  When she opened her eyes, they were perfectly still.  I knew it was the medicine, or the shock of surgery, and that it wouldn't last, but it still make me cry.

Once we got back to our room at the Ronald McDonald House, she was starting to feel some pain.  We got her loaded up on pain medicine and ate chocolate chip cookies for dinner.  Except for a few breaks for juice, she slept pretty much all the way through to morning.

This morning she woke up happy and eager to eat.  She has been a little tired, but is playful and silly.  She hasn't needed anything more than Tylenol to manager her pain.

Originally we were going to be staying through next Friday because Dr. Hertle would be out of town and not able to see her until then.  But during our talk after her surgery, he offered to come in after working in another city all day, to see her for post op today, so that we could get home much earlier.  I am so grateful and we'll be heading home early tomorrow morning!

One Day Post Op
During her post op appointment Dr. Hertle was really please with her results so far.  He says that her eyes are lining up very nicely, and noted that she is no longer using her chin up head tilt to see anymore.  He said that we will see the best results in about two months from now.  Her eyes should also no longer have the crying vampire look (His words, not mine.  I think the doctor is a True Blood fan) by then.

He would like to see her again in the next six to nine months so that he can retest her eye movements and everything, to measure her progress.

I took a video of her nystagmus last night and will post it once we get home since the internet service here is so poor.  I will continue to post updates on the state of her eyes, and her nystagmus as she recovers.

A huge thank you to everyone who has been so supportive.  Not just our amazing close friends and family, but people that are friends of friends, and perfect strangers have been amazingly supportive and offered so many well wishes.  This was very stressful for all of us and all the kind words have been so meaningful to us!  THANK YOU!

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