Saturday, June 24, 2017

Henry's Surgery

Henry has been a toe walker for...well...as long as we can remember.  We'd gone through some physical therapy last summer in hopes of helping him, and while it stretched out his tight feet and legs, it didn't solve the problem.  When the PT ended, the therapist advised that we have some occupational therapy and even a sensory evaluation to determine the next steps in helping Henry get off his toes.  I let it slide for quite a while.  

Adam wrote down some of his thoughts about what happened next so I will add that here:
"My dad is a lot of great things, but one of the things I often forget is that he is really quite a gifted physical therapist. I've watched him over the years passively observing my son, Henry. He'd always seemed more concerned about his gait and posture than I did. During our visit there last Christmas, my dad played a little balance game with all the cousins, but his only interest was likely Henry. At the end of the night, my Dad had a conversation with me that must have been a very tough for him to have. He made it very clear. There is something wrong with Henry, and I should see a neurologist to rule out the really terrible things (e.g. muscular dystrophy) and narrow in on what the issue is. I really can't remember being so scared. There was something wrong with my boy.

"We went to Henry's scheduled checkup with the pediatrician a few days later and asked for all the tests, and expressed our concerns. The tests thankfully came back negative. I've never been so relieved. The doctor referred us to a pediatric physiatrist for evaluation. The day before this meeting Claudia was at book club and mentioned Henry's toe-walking and coming appointment, and one of Claudia's friends, a speech therapist, recommended we ask about tethered cord. The physiatrist went through his algorithm and my wife mentioned tethered cord. The physiatrist had what looked like, to me, a kind of a "Eureka" look and scheduled an MRI.
"Last week, we met with a pediatric neurosurgeon and it was clear: Henry has tethered cord. (His symptoms included leg pain, muscle weakness, inflexibility, and bladder/bowel issues.) We saw the MRI. We saw the spinal cord being pulled lower than it should be. We saw the filum, which I guess isn't supposed to visible because of how thin it is except when tethered. We saw the small opening in a vertebra because it is technically spina bifida. And then the surgeon who effectively developed the surgery to correct this problem told me the relatively simple solution. Henry goes in tomorrow for back surgery. But I feel grateful that my dad knew something was seriously wrong and that he told me. I'm grateful Claudia was in that book club. I'm grateful she knew that friend that had seen other kids with Henry's symptoms. I'm grateful that the surgeon who will be performing Henry's surgery has been doing it for 20 years. My son is brave. He has been telling everyone about his surgery tomorrow."

Adam took Henry to the children's hospital first thing in the morning.  Henry had a last-minute bout of fear and he terrified of going to the hospital.  Henry was given something to help him calm down, and Adam and Henry called it a "bravery potion."  Adam said it made Henry pretty silly, but at least it calmed his nerves.



He got a litte dino to keep him company while he waited.  He named it "Rex."




Dr. Wehby finished the surgery in about 30 minutes and said that everything went perfectly.  


Before the surgery, Henry wanted to know if he could see a picture of his "string," as he called it.  Dr. Wehby was happy to oblige.  Henry was thrilled with his picture.

Fresh out of surgery



They needed to bring Henry out of the anesthesia slowly so that he wouldn't thrash around. In fact, he needed to stay on his back for the next 24 hours.  Like they did when he had his MRI, Henry was given a popsicle as he came out of anesthesia to help with a dry throat.  He was still half asleep, so it was funny to watch!



Bum shot!  Actually, that little piece of tape is all that was needed to cover the surgical incision.  It was amazing how small it was.


Goldfish, popsicles on demand, mac-n-cheese, power aid, and bedside movie. You'd think Henry created the menu himself. Not a bad gig for a 5-year-old.


I spent a good part of that day with Henry in the hospital, while Adam took Harper home.  He watched movies and played bingo using the tv and the hospital phone, winning a couple of really cool prizes.  The next day, Henry was able to sit up, gradually get up of bed, and later in the afternoon, he could come home.




Adam's mom got Henry a picture book about a boy named Henry.  We took the time to read a little story while we waited to be discharged.




As far as recovery was concerned, Henry needed to take it easy for the next two weeks.  No running around, riding his scooter, playing on a playground, or basically anything that could cause him to fall down.  This kid refused any and all pain medication from the time he came home from the hospital, so as soon as he started to feel no pain, getting him to take it easy became hard.  But he was a champ.

The first two weeks after the surgery, his nighttime wetting actually got worse.  I felt this sense of dread that we ruined Henry.  At our two week follow-up, the PA we met with explained that it could take months for things to show improvement.  I still felt frustrated.  And then, suddenly (I think it was a day or two after this follow-up), Henry started waking up dry or nearly dry!  And then he did it again for a week!  Adam and I noticed that he can hold it longer during the day.  Henry's gait has changed a bit, and he seems faster.  He can now reach down to his lower shin, where before he could only reach down to just past his knees.  We need to work on his strength - and certainly his stamina as he builds his muscle strength - but we've noticed some improvements.  We aren't completely in the clear for any of his original symptoms.  There is room for improvement, but the important thing is that he is already improving!  It's truly amazing.

Adam and I are so thankful for all the pieces of the puzzle that fit together so quickly and so seamlessly.  Before his appointment with the physiatrist at the end of January, I simply prayed that we could find some answers as to what was going on with Henry and that we might be able to "fix" his toe walking so that he could develop normally physiologically.  I had no idea what a journey we would be going on in such a short amount of time.  I am just thankful for how we were guided to the right path.

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