Nystagmus Surgery Trip Day 3 ~ Akron Children's for Surgery

Well the big day is here and Cole was a champ...a true Ironman.  Although the plan was to sleep in, the construction crew woke me up at 5:30am and got Cole up by 6:30am.  We had an easy morning in the room and then ventured down to the family room and put in a movie and played with a few other boys who were staying here at the Ronald McDonald House.  I was very worried Cole would struggle not having food after midnight, but he only asked for a snack a few times and did very well without.  He insisted he wear his new jersey that we bought last night - seemed fitting since we call him The Cole Man.

We walked over to the hospital and arrived by 12pm and met with the nurse to take vitals.  Upon arrival everyone was very edgy about his cough.  The nurse and tech were very skeptical and said it would be up to the anesthesiologist whether surgery would move forward as planned.  Johnny and I both think he walked in to the room with a plan to cancel.  Luckily, though, he listened to Cole's lungs and had him cough and said he didn't see any problem with it.  We reviewed Cole's LONG history...AGAIN...and got him changed and ready to go.  I was prepared for the tears as he was escorted away by the nurse and Child Life Specialist, but as Johnny said, Cole was voted "ladies man" last year at school.  The look he gives her before they walk out is priceless.  He had to be reminded to give his mom and dad a kiss good-bye.  He was all smiles!

We walked out at about 1:07 PM and surgery lasted just about an hour.  We met with Dr. Hertle in a consult room after the surgery and he said everything went smoothly.  He said Cole's left eye looks pretty good considering...but that the right eye is not in very good shape.  Nothing we didn't know already, but he did confirm the ROP did no internal damage (only damage to the periphery where it is expected). He also said that he expects Cole to see progress in his vision up until the age of 15 years old.  That was really good news.  He thinks his vision is probably closer to 20:300 (improving from the 20:500 or 20:800 we've heard before).  He said that Cole has Periodic Alternating Nystagmus and therefore he recessed all four muscles during the surgery.  The testing showed that he looks at something straight on until his eyes get tired, then he tilts his head to the right to get a different null point until he tires and then tilts his head to the left for yet another null point.

We talked about the cause of his low vision and Dr. Hertle said all his limitations are not caused by the nystagmus.  He said the majority is due to the developmental disruption from premature birth.  Some is related to the bleed and pale optic nerves.  Again, nothing new but good to have confirmation from a second source.  Unfortunately that damage cannot be reverse and the vision will not be regained.  He did say there are medications we should consider and that contacts are very helpful for children with nystagmus.  We will talk more about these in the appointment tomorrow.  There is also a risk that about 20% of patients end up needing a second surgery...we will also ask that question tomorrow as far as when we will know.

We were taken back to see Cole about 15 minutes later and he was moaning as we walked into the recovery room.  He was unconsolable as he was coming out of anesthesia so they gave him more morphine.  He was still in a lot of pain and wouldn't open his eyes so it was hard to see if he was fully waking up.  I was able to get on the stretcher so he could lay on my chest but continued to moan until the meds finally kicked in and he fell asleep.  We let him sleep for about 30 minutes and then woke him up to get back to the Ronald McDonald House to rest.  Unfortunately he was still in a lot of pain.  We called for Security to drive us back to the house and filled his prescription before we left.  He moaned the entire way back to the house and rested on my chest once we got there.  Unfortunately his eyes are swollen, the whites are dark red, the pupils are very large and he was bleeding from his eyes.  He hasn't really opened his eyes and when he sits up he immediately grabs his head in pain.  So we're taking it easy relaxing in the room, ordered pizza and Cole convinced dad to go to the hospital gift shop and get him the super hero figure he wanted.  I redosed his Tylenol and later his hydrocodone and he seems to be feeling much better.  He and dad have been playing with Batman and Robin for the last half hour.  We meet with the doctor tomorrow at 9am and will then head back to VA.  More tomorrow night with next steps!