Wednesday, December 22, 2010

Ayden lost his granny glasses!

YAYYYY!  Tuesday, December 14th, 2010 was a long awaited day in our family!  Since I first found out for sure that the boys both have ocular albinism and nystagmus I have been doing research.  Shortly after this research began I learned of a great doctor who was preforming surgery on patients with nystagmus and getting amazing results.  I contacted this doctor for a recommendation of a doctor closer to our home (which was still Oklahoma at that time).  As luck would have it the only doctor he recommended was Dr. Tychsen from St. Louis.  Weeks after receiving this recommendation Jeff was offered a job in St. Louis.  We waited patiently for Jeff to start his job and for his insurance to kick in so we could make an appointment with Dr. T.  Our first appointment was nearly a year ago, in January.  He immediately confirmed all our thoughts on the boys vision and began talk of surgery!  At our last appointment over the summer he decided it was time to schedule Ayden's surgery.
Ayden has his best vision when his chin was down.  This is where he can see out of his null point, which is his best point of vision for really focusing on something/someone.  Doing this "granny looking of her glasses" move so much throughout the day was sure to wear on his neck and back muscles and could cause development/growth issues.  This was Dr. T's reason for having Ayden go first.  The first available date for surgery was December 14th and we immediately accepted.

Fastforward to this past week...
I began to get nervous as the day approached.  Not as nervous about the procedure itself as for EVERYTHING else involved with it. 
~ The boys were going to be separated for several hours and this is not normal for them (or me for that matter!)
~ We were going to have to get Ayden up and not let him eat (Scary thought when the first thing he says when I come in his room in the morning is usually "eat"!)
~ I was worried about how Ayden would separate from us to go to surgery (He doesn't just go with strangers!)
~ Since he had never had any kind of drugs I worried how he would react to them.
~ We were going to have to get Ayden up early.  In doing this we hoped that Ayden would not cry and scream AND that Ashton would not hear us/Ayden and wake up also.
~ Ashton was going to be spending several hours without Mommy, Daddy or Ayden.  This was going to be a first and we weren't sure what to expect, even though he was in good hands with Nana and Papa!
~ Well....I will stop here because my list of fears could go on (stupid pregnancy hormones!)

December 13th
Nana and Papa got to the house about 5pm (the boys were still napping) and they got them up and played with them while I took a friend to the airport (more about that soon!).  When Jeff and I got home Nana and Papa treated us all to a pizza dinner.  Since we were getting up early Nana and Papa spent the night in our B & B, baby's nursery, guest room.  We tried to go to bed early to prepare for our long day ahead.

December 14th
Jeff and I got up about 6am and got ready.  We got Ayden up at 7 and gave him one last drink of water before packing him up (still in his pj's and with his santa hat on) and we headed to St. Louis Children's hospital.  This is about a 45 minute drive, made a little longer with STL rush hour traffic.  We had to do one last set of measurements at Dr. T's office, just a couple floors down from the outpatient surgery floor.  His office opened at 8:30 and we got there just in time to visit the restrooms before going in.  They had us in and out quickly and we then went upstairs to check in at the outpatient surgery desk.
We got all our instructions and were taken back to our room very quickly.  Ayden was doing great throughout all of this. He was very clingy and wanted to be carried the entire time.  We sat in his room talking, reading books, etc for quite awhile.  Then we decided to visit the playroom down the hall.  Adyen finally lightened up and enjoyed going from toy to toy not worrying about sharing with anyone (the room was empty!).  We hadn't been there long when we saw Dr. T approaching.  We talked to him a minute and our nurse, Ms. Peggy, arrived.  We were shocked that they were running ahead of schedule and she told us that it was a "Christmas miracle!"  We weren't going to argue!  We got Ayden changed and they gave him some Tylonel for the pain and another drug to put him in a fog so that he would not put up such a fight when separating from us and getting prepped for surgery.  A few minutes later the anesthesiologist and his team arrived.  We visited a few minutes and then they allowed us to carry Ayden while they pushed his bed until we got to the "No Parent Zone".  At that point Jeff asked Ayden for a kiss and Ayden responded with a timid "No".  I thought the worst at this point and figured the meds had not kicked in!  Jeff then asked again and Ayden kissed him and then he came to me and gave me a kiss.  Then the anesthesiologist reached out and Ayden went to him.  I then knew the meds had indeed worked!
I then waited around in our room for a little bit, just in case, while Jeff went to the parking garage to find my lost phone in the car.  It was about 10:20 at this time.  After Jeff returned we went to the cafeteria and got some lunch about 11.  We returned about 11:20 and the nurse came in to let us know the doctor had already been by to let us know it went well but, he would be back again.  She told us the recovery room would call us back shortly.  Within minutes they called us back to get him from his recovery nurse.  Dr. T met us on our way out and told us it went great and he didn't think he would even need to see him for 3 months, he would just call and check on him in a week or so!  Ayden was just starting to wake up when we got to him.  He was very drowsy and didn't realize we were even there for a few minutes. 
After only a few minutes in the recovery room the nurse said he was ready to go back to his room so she pushed his bed while we walked beside Ayden.  This was about noon.  Once in the room Ms. Peggy came to check on us and went to fill Ayden's sippy with a first time treat - apple juice!  They wanted him to have something with a little sugar in it.  While she was gone Ayden really started to perk up and asked to go for a ride in his bed!  This was when we knew he was going to be ok!   A few minutes later he asked to go back down the hall to the play room!  We couldn't believe it and we just smiled and laughed at how quickly a child can get over something that an adult would be complaining about for weeks!  Ayden sucked the juice right down...luckily it stayed down too!
In the morning when we were first brought to the room the nurse turned the tv on to a cartoon channel.  Since the boys don't watch tv Ayden didn't really pay any attention to it.  At one point a Christmas cartoon came on and he was pretty interested in Santa though.  So, while drinking his apple juice he asked for the tv to be turned on.  We were shocked but we obliged.  We were thrilled to see that right there, only minutes out of the recovery room Ayden was no longer "looking over his granny glasses"!  We could see right there that his null point was corrected and it brought tears to both of our eyes as Jeff and I watched Ayden.
After coming around Ayden didn't like the iv and monitor he was attached to.  Ms. Peggy said that if he was still doing good in 30 minutes she would take it off.  About that time she introduced us to another nurse who would take care of us for a bit while she ate her lunch.  I then got Ayden out of his bed and he sat on my lap while we read and cuddled!  At about 12:30 this nurse came in to take out the iv, etc. As she was finishing up Ms. Peggy returned from lunch to check on Ayden.  Since he was doing well they started giving us all of our instructions for going home and a dose of heavy pain reliever.  We got Ayden dressed (while holding onto him tight since he was very dopey!) and gathered our stuff to go home.  Daddy drove the car to meet us at the doors and we met our first real tears of the day.  We aren't really sure what the problem was, but Ayden didn't want to get in his car seat.  I got in the back seat with him to calm him down and Jeff was able to finish getting him fastened in.  We were guessing the meds just had him a little confused with what was going on.  We were on the highway shortly after 1pm and Ayden had a difficult time keeping his eyes open, but did stay awake the entire ride!

We returned home to Nana, Papa and Ashton.  Ayden greeted Ashton with "knucks" and a kiss!  It was very sweet!  We let them play for a bit before putting them both down for a nap.  Ayden has continued with this great recovery!  We gave him over the counter pain medicine that evening and again the next morning and night.  Even this was just precautionary, and he did great!  They told us he might be a little off for a day or so and might be a little cranky for up to a week.  We really didn't experience much of this at all.  They also said the whites of his eyes would be red for 7-10 days.  The day after the surgery they were a little red but it was gone by the next day.  We do have to put an ointment in his eyes every night before bed for a week.  He was been pretty tolerant of this though.

These are some pictures taken after the boys woke up from nap the day of surgery.(Excuse Ayden's face, he was also eating his snack!)
In all, we are very pleased with the outcomes and now we anxiously await Ashton's surgery date!  I video taped Ayden's eyes the day before surgery and plan to do a comparison video this week.  Once I get this done and the video's downloaded I will post them here.