Collin's first round of maintenance medication, which was given for two weeks in November, went well. It didn't make him sick to his stomach, and his blood counts weren't hit hard like they could have been. The biggest side effect was the dry skin from the Accutane. His second round was postponed for the eye surgery that was scheduled for the beginning of this month. Collin and I flew to Houston on Thursday November 30, the surgery took place yesterday, and we will fly back home to Harrisburg on Saturday December 8. Overall, yesterday's surgery went well; it just didn't go quite as planned.
Just to review some background...In 2010 as a result of either his brain surgery or hydrocephalus, some of the nerves that control Collin's eyes and facial muscles were damaged, which caused the right side of his face to be paralyzed and his eyes to turn in (looking crossed). Back in 2011, Collin had the first surgery to try to straighten his eyes. At that time, the ophthalmologist (Dr. Weinstein) tightened the muscles on the outside of each of the eyeballs, and injected botox into the inner muscles of each eyeball to help those muscles relax so the outer muscles could more easily pull the eyes outward. There was an immediate change in Collin's eyes, but over time they turned back in, although not as far as they originally were. Dr. Weinstein then recommended a second procedure, where he would loosen the same inside muscles that he had injected the botox into, to help the eyes turn out again. He also recommended a third procedure where he would move the muscles from the top and bottom of the eyes, which move the eyes up and down, to the outside of the eyeballs, to further help the weak outer muscles pull the eyes outward.
Before proceding with a second and third surgery, we took Collin back to the opthalmologist (Dr. Frankel) who found the pressure on his optic nerve which lead to the brain tumor diagnosis in 2010, to get a second opinion. He didn't feel the second procedure would benefit Collin at all, but did agree with the third recommended procedure. However, he said we would need to find a skilled surgeon to do the procedure. Then Collin relapsed, and scheduling more eye surgery was put on hold.
So over this past summer, while we were in Houston for Collin's proton radiation, we saw an ophthalmologist (Dr. Edmond) who also agreed that the third procedure would be best way to go. Furthermore, she had done the procedure many times before, so we felt comfortable having her do the surgery. She also wanted to do something to lessen the vertical nystagmus, or bobbing up and down of the eyes, that is also a result of the nerve damage. That is how we ended up back in Houston this week for Collin's eye surgery.
We left the house yesterday at 4:30 am to be at Texas Children's Hospital by 6:00 am for the 7:30 surgery. Before the surgery, he was given a pair of TCH pajamas to put on for the surgery, and then take home. He was so excited about this, and he couldn't wait to "tell Neya and Daddy about my new jammies!" I left Collin asleep in the operating room around 7:45, and he was finished around 9:45. Dr. Edmond's plan was to move half of the muscles from the top and bottom of the right eye to the outer edge of the eye to pull it outward, and then tighten the remaining muscle below each eye to lessen the vertical bobbing. During the surgery however, she found that the inner muscle of the right eye was extremely tight, tighter than she has ever seen before. This happened because the outer muscle of the eye was so weak that it just couldn't counteract the inner muscle. So, she ended up loosening the inner muscle, which enabled the eye to straighten pretty well right away; then she tigtened the muscles below each eye. She didn't move any muscles to the outside of the right eye as originally planned, because she didn't want him to go from looking at his nose to looking at his ear. If any further adjustments need to be made, they can be done at a future date.
Collin woke from anesthesia fairly quickly and calmly, but was very drowsy due to a dose of morphine. We stayed by his side and let him sleep for a few hours in recovery before taking him home. He held onto my hand for the whole time, and would periodically ask, "Are you still here with me, Mom?" Once we got him home, he rested on the couch, and ate soup and crackers, which thankfully he kept down.
Collin's eyes were swollen closed after the surgery. This morning his right eye, which is more swollen than the left eye since it had more done to it, was stuck closed. It took me quite some time this morning to clean it up so that it could open. Poor Collin just cried the whole time, because he is understandably anxious when anyone touches his eyes. He is on some Tylenol with Codeine for pain, and antibiotic eye drops to prevent infection. Today I've also applied some cool compresses to help any discomfort and reduce swelling. As the day has gone on, his right eye has opened some more, and from what I can see, his eye looks more centered. The vertical nystagmus in the left eye does seem greatly improved. We will follow-up with Dr. Edmond Thursday. As usual, Collin has been a brave trooper, and is in good spirits.
