The week before Christmas, my oldest son Finn was unexpectedly hospitalized and underwent two surgeries. Not a lot of people knew about his history with hydrocephalus, so I wrote about the first shunt placement here. This is the story of his first and second revisions that occurred in December 2013.
Around age 4 — Finn had had his shunt for about three years — he started to get occasional headaches that were bad enough to make him throw up. Now, the doctors will tell you that the first two signs of a shunt malfunction are headache and vomiting. You’re to go to the ER for CT scans and xrays so they can check out the shunt.
Well, these are also the symptoms of a migraine headache, of which my family has a history.
So after several trips to the emergency room for headache and vomiting and no indications on CT scans that the shunt was causing this, the doctors concluded that Finn was having migraines.
They were pretty frequent for a few years, and we tried a few medications to prevent and treat. The last few years though, as he’s matured and has been able to tell us when it’s coming on so we can address it quickly, they’ve slacked off.
So on Monday, December 18th, when he woke up with a headache, it wasn’t anything out of the ordinary. I gave him medicine and sent him back to bed to sleep it off. He missed school that day, but by lunch was feeling better and had a normal afternoon.
Tuesday morning, same thing, except this time, I gave him medicine and had him get ready for school, hoping the medicine would kick in before we actually made it to school and he’d feel well enough to go.
But when we got to school he wasn’t any better, so I kept him out with me. Again, by noon time, he was pain free and feeling good.
I had a Christmas party that night and he had basketball practice; a babysitter was coming to stay with Caden. I debated letting him go to basketball, thinking he might need extra rest to make sure he didn’t get a headache the next day. He sweetly and sincerely informed me, “but mom, my team needs me,” and I melted and let him go.
I got home from the Christmas party and the sitter said he’d gotten home from practice feeling fine and had gone to bed on time.
All was good til he woke me up at about 3 in the morning, calling out from his room, “mom, my head really hurts.”
I gave him medicine, but he threw it up. For the next two hours he would hurt, throw up, sleep, repeatedly in that order, until finally at 5 a.m. I made the decision to take him to the ER when he was getting any better and there was nothing more I could do to help him.
Because of his shunt, the ER ran CT scans and xrays, to rule out a shunt malfunction.
Every other time the scans had showed that the shunt was working fine.
But this time that’s not what happened.
This time there was crack in the catheter that went from the shunt into the ventricles of the brain.
This time it wasn’t just a headache.
We were about to have our first shunt revision.
I’ve read on the Hydrocephalus Association web site and newsletter about shunt revisions and children who’ve had multiple shunt revisions, and I knew that we were in the minority to have our shunt last as long as it had — almost 10 years.
When they gave me the news, I was very practical about it — asking what, where, when, etc. But once alone, the emotions of the situation hit. I cried. Not sobbed, just light tears. I didn’t want Finn to know I was crying, I didn’t want to scare him. I wanted to be strong for him. But in my mother’s heart, I was hurting that he was going to have to go through this.
I didn’t even know at the time why I was crying. I wasn’t scared, or sad, or worried even. Concerned, but not worried. I’ve since pondered my reaction and believe my tears streamed from a place of helplessness because that’s how I was feeling.
The next few hours are kinda blurry as Finn mostly slept and I signed permission papers and talked to a slew of medical folks about what was about to happen — the surgeon, nurses, anaesthesiologists, etc.
The surgeon hoped to only have to replace the cracked catheter and the shunt valve.
But when he opened the shunt to replace the valve the shunt just fell apart — it had worked hard for 10 years and was worn out — so he replaced the whole thing.
That was the good news. The
bad concerning news was that a little bit of blood had gotten into the ventricle during surgery, and it was possible the blood could plug up the new catheter. More scans were ordered and we were sent to intensive care where Finn could be watched more carefully for this.
For the next few days Finn’s recovery was slow. He didn’t come out from under the anaesthesia very quickly, and some of the pain meds made him sick to his stomach. He would improve some but then he would worsen. And the next time he improved it wasn’t quite as good as before and when he worsened it was worse than before. They tried a few different things — changing his pain medicine, adjusting the shunt flow rate, and steroids to reduce the inflammation and break up the blood in the ventricle — but he was still having headaches and throwing up and the pain was getting worse not better.
So on Sunday the 22nd the surgeon went back in, and sure enough the catheter was partially clogged with blood. He placed the catheter in a different place in the ventricle, away from the blood, and Finn’s recovery from the second revision was radically different! He was alert and able to talk in sentences; no more light sensitivity (he was VERY photosensitive when the shunt wasn’t working) and his appetite bounced back quicker.
After days of enduring him writhing in pain and discomfort and being absolutely helpless to do anything about it, my heart was overjoyed to have him well!
Here’s hoping for another 10 years — or more — and prayers for miraculous healing too!
The week before Christmas, my oldest son Finn was unexpectedly hospitalized and underwent two surgeries. Not a lot of people knew about his history with hydrocephalus, so before I write about the shunt revision(s) that occurred last week, I want to tell the original shunt story.
In January 2004, my firstborn, Finn, was six months old, and we took him to the pediatrician for his six month check up.
The nurse weighed him, measured his length and measured the circumference of his head, all of which was normal for check ups, prior to seeing the doctor. After doing all that, she left the room to let the doctor know we were ready to be seen, but she returned a moment later.
She said she needed to double check Finn’s head measurement, that she thought maybe she wrote it down wrong.
I suspected nothing. Her writing down the wrong number seemed like a thing that could happen.
The pediatrician came in and did his exam, asking questions about how much he was eating and sleeping, checking his heart rate, etc.
And then it happened.
“I want to measure check his head measurement again,” the doctor said.
My heart sunk into my gut.
I knew then: something was wrong.
The nurse double checking was acceptable. But a third time? Something was up.
Something indeed was up. Finn’s head size — which had grown about 2 centimeters between the every other month check ups — had grown about 10 centimeters since we last saw the doctor.
How could I not have seen this, right? That’s what I asked myself. Well, when you see your child every day, all day, I just didn’t see it. He could hold his head up well, but he fussed after holding it up for a long while. He didn’t like tummy time and he wasn’t rolling over. These were indicators, but I justified that he was a big baby — which he was — 9 lbs. at birth and more than 20 lbs. at 6 months. He was laid-back and content not being mobile, I thought.
So back to the doctor’s office — our doctor said he thought Finn had hydrocephalus, which in common terms is water on the brain or fluid on the brain. It’s not actually water; it’s cerebral spinal fluid (CBF) which is the fluid that goes from the brain around the spine and back to the brain in a continuous cycle. In people with hydrocephalus, the fluid builds up in the ventricles of the brain, where the fluid is produced and absorbed, causing an increase in head size.
He referred us to a neurosurgeon who ordered an immediate CT scan.
My baby was so brave lying down in the big scary noisy machine. All during the scan his big blue eyes were looking straight into mine, as I was there holding his hand and offering shush-ing sounds and the occasional “you’re OK, mama’s right here” to keep him calm. He didn’t cry one bit.
The CT showed what the doctor suspected — Finn indeed had hydrocephalus. The surgeon explained that hydrocephalus has several causes — the brain can be overproducing or under-absorbing CBF, or the passageways that carry the fluid could be narrow somewhere along the path. Whatever the cause, the only “fix” is to place a shunt into the head to move the excess fluid off the brain and into the cavity of the abdomen.
So at six months old, he had brain surgery. The picture in this post was taken after he woke up from the surgery. He was a such a happy baby, before and after, and thankfully had no complications. Potential risks were that the shunt wouldn’t work, infection at the incisions, brain damage, etc.
After the surgery, all was well. Finn had some catching up to do with learning to roll over, crawl, and walk, but he caught up quickly to where he needed to be.
For all these years, if you didn’t know that Finn had a shunt you wouldn’t have known. He’s just like any other child his age, which not everyone with hydrocephalus is so fortunate. I receive the Hydrocephalus Association newsletter, which has stories sometimes about children who endure multiple complications and shunt revisions — when the shunt has a problem, the surgery to fix it is called a shunt revision.
According to the Hydrocephalus Association, 50 percent people with shunts have to have a shunt revision within two years.
We were blessed for nearly a decade to have no problems.
To be continued ….
This post isn’t about the shunt they placed in my baby’s head as an infant or the replacement shunt they put in this week.
This is about one of the worst feelings ever, and that is the helplessness of being at your child’s bedside when he’s sick and being unable to fix it, even just a little.
Two nights ago he was in pain and vomiting in the middle of the night, and all I could do was lie at the foot of his bed and pray for healing.
It reminded me of parents in the Bible leaving their child’s bedside to run to Jesus to ask him to heal their sick child. I was doing that same thing, begging God to make him feel well because whatever was going on that was making him sick was beyond my abilities to fix.
I laid at my child’s feet and prayed to God and felt akin to those parents from Jesus time. Except one difference — I had/have the Holy Spirit that allowed me to simultaneously run to Jesus while never leaving my child’s side.
Jesus called the Holy Spirit a Comforter, and it was to me at that moment a great comfort, just to know I could talk to my God right then and there and pray for healing.