Tuesday, August 16, 2016

Bilateral Strabismus Repair Surgery

All people with Albinism have some degree of vision problems. Scotlyn is very near sighted, she has nystagmus, photophobia, and strabismus. We noticed her nystagmus, the involuntary eye movement, when she very young which led to her diagnosis of Albinism. As she got a bit older we noticed the eyes were also turning inward at times and were told by her Pediatric Ophthalmologist, who is also her surgeon and who we see almost every three months, that she would eventually need Strabismus surgery. We were put on a waiting list and then got a call with a date and waited anxiously for it to approach.

Our little Scottie had Bilateral Strabismus Repair Surgery on both eyes on August 15th when she was almost 16 months old. Strabismus is common for people with Albinism and for Scotlyn it causes the opposite eye that is focusing to turn inward. The surgery that she had loosened the inner eye muscles to help the eyes align properly. We were told that this is the easiest way to try and correct the inward turn and that the next step would be to tighten the muscles on the outer eye if needed. We were also told that this surgery would only correct about 70% of the inward turn and that because of her Albinism there is a greater chance of needing a second surgery at some point.

Surgery times are based on age and pre existing conditions, which allowed Scotlyn to be the first surgery of the day. This was terrific news because Scottie wakes up every morning around 6am and wants her cup of milk pronto. We are about an hour from where the surgery was, so we carried our sleepy baby straight from her crib to the car seat just before 5am and thankfully she slept until we got there. Once we were there it was enough of a distraction she didn't seemed as bothered by thirst or hunger, as I had dreaded. They called us in with the nurses right away where she was weighed, had her blood pressure taken, put numbing cream and bandages on her hands to help with IV pain, and a ID bracelet around her ankle. This would all be fine and dandy, but Scottie is preconditioned to be terrified of all these things after some bad blood work experiences when she was being tested for HPS (a type of Albinism with more serious health consequences).

The surgeon and the anesthesiologist came to talk to us and answer any questions and then she was called in for surgery at 7:20am. One parent was allowed to take her into the OR, so I suited up and brought her in. They decided to use a mask to put her to sleep before starting the IV, so I held her while they put a small mask over her mouth and nose and eventually she was asleep, so I laid her on the table and was shown out. She was really scared and it was so hard to see my sweet baby in an operating room like that, but they assured me she was in good hands.
They gave us a pager, so we could go have breakfast and wait. It wasn't long before my husband Kyle, who had gone to the vending machine, came running to our breakfast table pager in hand saying they were ready for us.

We waited in a little room for her for about 20 minutes when I heard her cry and a man came carrying our sweet baby with an IV plug in one hand and blood pressure cuff on the other. Her tears were quite bloody and her nose was really itchy from the morphine. She went through a few phases of crying and being agitated to cuddling and sleeping on my chest while we waited for her to be allowed to go home. She had to have a little bit of water before we were allowed to go, so eventually she woke up enough to take a drink and started chugging back from her sippy cup.

She slept the whole drive home and then when we were two minutes from home she got a little bit sick in her car seat. After being home, Scottie slept on my chest for a while and then she woke up and got really sick power puking up any bit of apple juice and water she had managed to drink and then she crashed. When she woke up around two she was pretty much back to her wild ways running around being a monkey. Her eyes are quite red in the inner corners and they have a raised bubble which happens in 75% of cases. She has prescription eye drops we need to give her four times a day which she fights and hates and other than that just Tylenol.

It will be 12 weeks before we know the full extent of how successful the surgery was, but we go back in two weeks for a check up with the pediatric ophthalmologist. It was a tough day, but she never ceases to amazes us how resilient she is and so full of joy.