(Bright and happy, 3 weeks after surgery. The scabs on the incision were coming off by that point. The scar runs from behind his left ear up to the top of his head, then at a right angle from the top of his head toward the back of his head about three inches. Within 2-3 months, his hair had grown back enough that strangers didn't notice the scar anymore.)
The short version: It took about 6 weeks for John to recover from the surgery.
Hospital stay (8 days)
At first, John was very uncomfortable and didn't do much besides sleep and cry. We were warned that he would be very irritable for a week or two, and he was. He was especially sensitive to movement—even the smallest change in position would upset him.
For the first two days, John lived on Pedialyte through his g-tube. I gleefully watched the purple sugar water begin to flow, grateful that John was off the ketogenic diet at last.
A few days after surgery, John was moved from the PICU to a regular nursing unit. The team removed his thick gauze pressure cap and took out the drain that was removing excess fluid in his brain (I was glad to see that go--seeing the container of blood hanging from his crib had made my stomach turn). The incision site was quite swollen and John’s head was oddly shaped, but it quickly return to normal.
On the fourth day after the surgery, the face that greeted me from the crib in the morning was familiar and unfamiliar at the same time. Familiar, in that the swelling had subsided and he appeared and acted more like his normal self. Unfamiliar, in that despite the fatigue there was a look of calm interest in his eyes, as if he were looking at everything for the first time. For his entire life he had lived with constant abnormal electrical activity in his brain. Even when he hadn't actively seizing, he had been spiking. For the first time ever, his mind was calm. And for the first time, I was calm, because I wasn't constantly on seizure watch.
Physical and occupational therapists came by our bedside every day, working briefly with little John and teaching us to do infant massage on his right arm.
By the fifth day, John was still tired and extremely irritable, but largely back to himself. He had some odd movements that we were concerned might be seizures, and were briefly devastated even though we were told to expect some odd seizure activity as his brain heals. Thankfully he only had a few of those episodes. On the fifth day, we also tried taking John off the heavy pain meds and giving him just Tylenol instead, and he was one miserable little fellow, so we put him back on the Tylenol with codeine and he was much happier.
The doctors were amazed at his recovery. Dr. Wyllie, who was the neurologist covering the floor, commented, "I can't believe how good he looks. I really can't believe it." The rehabilitation doctor said it had been a long time since he had seen a child look as good as John a week after surgery.
(Just four days after surgery, John was smiling, laughing, and loving all his balloons!)
I had great expectations for John’s first day of rehabilitation. Instead, I got a healthy dose of realism as I cleaned up about five episodes of projectile vomiting and changed his outfit the same number of times before we even got out the door. I was worried about aseptic meningitis and took him back to the hospital, but in fact it turned out to be nothing but a nasty gastroenteritis bug that also got me, my sister, my niece, and poor Dr. Wyllie, who had just done a photo shoot with little John so he could be the poster boy for successful resective surgery. I had realized that John could finally have photographs with flash, without the flash causing a seizure!
We decided to return to California and skip the intensive outpatient rehab. Not only were we recovering from gastroenteritis, but I felt that John was still too sensitive from the surgery to put him through that. Back home, I packed our schedule as full of PT and OT as I could from as many sources as we could get. In retrospect I do wish we could have done an intensive rehab program of some kind, but all in all it worked just fine.
Great Things About The Recovery Period
Seizure Freedom
One morning not long after the surgery, John woke up in the morning and stretched his arms high above his head and scrunched his little face up, as babies often do when they wake up. I couldn't remember when, if ever, I had last seen him stretch like that without having a seizure immediately afterward. Instead, he just stretched, yawned, and went back to sleep. It struck me as a profoundly beautiful thing. It never felt strange that he wasn't having seizures--on the contrary, for the first time since he had been born I felt normal, like finally this was the way it was supposed to be.
Developmental Progress
Within a week, John's babbling had changed and he was making lots of new sounds. He had better trunk control than ever, and within three weeks he was briefly sitting up unassisted. Within 2 months, he was rolling over. Within 5 months, he was saying words. Within 6 months, he was beginning to use his right hand in a more functional way. Within 9 months, he was crawling. Within 10 months, he took his first step.
Alertness and Interactivity
Within about 5 days of the surgery, John began to have long stretches of awake, happy time to play with me. I felt as though we were really communicating in a way we never had before. I could tell he was learning at lightning speed. When I said, "Get Mommy," he would reach out and pat my face. I taught him how to hug.
Incision Site Healing
We were fortunate that John's incision site healed very well. A doctor friend of ours at home removed the stitches 14 days after the surgery. The site was caked with dried blood, but this gradually fell off over a week or so. Within a couple of months, his hair had grown back enough that strangers didn't notice the scar.
Proving Them Wrong
A few weeks after the surgery, we ran into the old keto nurse practitioner who had made me feel like a bad mom for being a good mom, who told me she didn't understand my sense of urgency about my baby's seizures, who told me to stop doing my own research and just trust her, who told me John wasn't a candidate for surgery, who told me I should just settle down because I would have to deal with my son's seizures for years, if not his whole life. I hope I was not feeling unrighteous pride when I presented my seizure free, happy, charming, developing son.
Not So Great Things About The Recovery Period
Facing Reality
At a certain point I had to come back down to earth and recognize that although the surgery succeeded beautifully, little John had not magically turned into a normal child. We had long hard years of therapy ahead of us.
Removal of Stitches
All the doctors made it sounds like this would be no big deal, and I guess in the big picture it isn't, but John bled and cried and it was awful. I had given him some painkiller about an hour before and I was so glad.
Irritability, Overstimulation, and Mood Swings
Medication Level Fluctuations/Residual Seizure-Like Activity
A few days after the surgery, John had some seizure-like episodes of jerking that were devastating, but they went away quickly and we never saw them again. A few weeks after the surgery, John began to act strangely--he was highly irratable and he would moan, laugh strangely, and have strange twitches and jerks that looked earily like his old seizures. We took him in for a Phenobarbital level and learned that his Phenobarbital level was almost twice as high as it should be (59! Therapeutic range is 15-40). We were indescribably relieved to reduce his Phenobarbital dose and see him return to normal.
Flat Head
A week after surgery, John's head had become flat as a pancake in back from all that lying around. He had been wearing a helmet for positional plagiocephaly before his surgery, but he hadn’t been able to wear it since. A few weeks later, with multiple scans confirming that his head was indeed getting flat again, we got a new helmet for him, which worked great, and he continued to wear it at night until age 2.
Mystery Blister
John developed a large blister on his thigh a few days after the surgery, which no one in Cleveland seemed concerned about other than to order up some antibiotic ointment to keep it from becoming infected. Two and a half weeks later, and despite daily dressing changes and antibiotic treatment, the sore was still large, red, and appearing infected. So I took him to the doctor, who said it was no cause for immediate alarm but was suspicious for MRSA, a kind of staph infection that is often transmitted in hospitals and is resistant to first-line antibiotics. The culture came back negative for MRSA, but the blister began to heal as soon as we put a different, stronger antibiotic cream on it. To this day we don't know what caused it, but it has healed now.
We decided to return to California and skip the intensive outpatient rehab. Not only were we recovering from gastroenteritis, but I felt that John was still too sensitive from the surgery to put him through that. Back home, I packed our schedule as full of PT and OT as I could from as many sources as we could get. In retrospect I do wish we could have done an intensive rehab program of some kind, but all in all it worked just fine.
Great Things About The Recovery Period
Seizure Freedom
One morning not long after the surgery, John woke up in the morning and stretched his arms high above his head and scrunched his little face up, as babies often do when they wake up. I couldn't remember when, if ever, I had last seen him stretch like that without having a seizure immediately afterward. Instead, he just stretched, yawned, and went back to sleep. It struck me as a profoundly beautiful thing. It never felt strange that he wasn't having seizures--on the contrary, for the first time since he had been born I felt normal, like finally this was the way it was supposed to be.
Developmental Progress
Within a week, John's babbling had changed and he was making lots of new sounds. He had better trunk control than ever, and within three weeks he was briefly sitting up unassisted. Within 2 months, he was rolling over. Within 5 months, he was saying words. Within 6 months, he was beginning to use his right hand in a more functional way. Within 9 months, he was crawling. Within 10 months, he took his first step.
Alertness and Interactivity
Within about 5 days of the surgery, John began to have long stretches of awake, happy time to play with me. I felt as though we were really communicating in a way we never had before. I could tell he was learning at lightning speed. When I said, "Get Mommy," he would reach out and pat my face. I taught him how to hug.
Incision Site Healing
We were fortunate that John's incision site healed very well. A doctor friend of ours at home removed the stitches 14 days after the surgery. The site was caked with dried blood, but this gradually fell off over a week or so. Within a couple of months, his hair had grown back enough that strangers didn't notice the scar.
Proving Them Wrong
A few weeks after the surgery, we ran into the old keto nurse practitioner who had made me feel like a bad mom for being a good mom, who told me she didn't understand my sense of urgency about my baby's seizures, who told me to stop doing my own research and just trust her, who told me John wasn't a candidate for surgery, who told me I should just settle down because I would have to deal with my son's seizures for years, if not his whole life. I hope I was not feeling unrighteous pride when I presented my seizure free, happy, charming, developing son.
Not So Great Things About The Recovery Period
Facing Reality
At a certain point I had to come back down to earth and recognize that although the surgery succeeded beautifully, little John had not magically turned into a normal child. We had long hard years of therapy ahead of us.
Removal of Stitches
All the doctors made it sounds like this would be no big deal, and I guess in the big picture it isn't, but John bled and cried and it was awful. I had given him some painkiller about an hour before and I was so glad.
Irritability, Overstimulation, and Mood Swings
John was very sensitive to touch for the first few weeks, especially the first week. He would cry at the slightest movement. He also became easily overstimulted by sound, light, or changes in scenery. In church, he would cry every time the congregation began to sing. I'd calm him down, only for him to start crying again with the next verse. We went to a friend's house for a quiet dinner and he was completely overwhelmed, crying inconsolably--very uncharacteristic for him before and since.
Emotionally, John acted various degrees of what we called "manic"--not a good term, but an adequate shorthand for his wide mood swings. Most of the time, he thought everything in the world was absolutely hilarious--you just had to make eye contact with him and he laughed riotously. Then sometimes--like 2am in morning--he'd cry inconsolably for no apparent reason. We had seen this before, every time he underwent some big neurological change, such as when he started making large ketones and, to a lesser extent, when we changed his medications. We were sure it would subside as his brain healed, and it did. In the meantime, it made for a really funny baby!
Emotionally, John acted various degrees of what we called "manic"--not a good term, but an adequate shorthand for his wide mood swings. Most of the time, he thought everything in the world was absolutely hilarious--you just had to make eye contact with him and he laughed riotously. Then sometimes--like 2am in morning--he'd cry inconsolably for no apparent reason. We had seen this before, every time he underwent some big neurological change, such as when he started making large ketones and, to a lesser extent, when we changed his medications. We were sure it would subside as his brain healed, and it did. In the meantime, it made for a really funny baby!
Medication Level Fluctuations/Residual Seizure-Like Activity
A few days after the surgery, John had some seizure-like episodes of jerking that were devastating, but they went away quickly and we never saw them again. A few weeks after the surgery, John began to act strangely--he was highly irratable and he would moan, laugh strangely, and have strange twitches and jerks that looked earily like his old seizures. We took him in for a Phenobarbital level and learned that his Phenobarbital level was almost twice as high as it should be (59! Therapeutic range is 15-40). We were indescribably relieved to reduce his Phenobarbital dose and see him return to normal.
Flat Head
A week after surgery, John's head had become flat as a pancake in back from all that lying around. He had been wearing a helmet for positional plagiocephaly before his surgery, but he hadn’t been able to wear it since. A few weeks later, with multiple scans confirming that his head was indeed getting flat again, we got a new helmet for him, which worked great, and he continued to wear it at night until age 2.
Mystery Blister
John developed a large blister on his thigh a few days after the surgery, which no one in Cleveland seemed concerned about other than to order up some antibiotic ointment to keep it from becoming infected. Two and a half weeks later, and despite daily dressing changes and antibiotic treatment, the sore was still large, red, and appearing infected. So I took him to the doctor, who said it was no cause for immediate alarm but was suspicious for MRSA, a kind of staph infection that is often transmitted in hospitals and is resistant to first-line antibiotics. The culture came back negative for MRSA, but the blister began to heal as soon as we put a different, stronger antibiotic cream on it. To this day we don't know what caused it, but it has healed now.
