Living With: A Child with Hydrocephalus – Part 2: The second surgery

in Hydrocephalus, Living With

If you haven’t read part one of this essay you can find it here.

Bug recovered quickly after his first surgery, that’s the benefit of being a baby, fast healing and a short attention span. It helps that he was very easy to comfort.

After surgery number one the twice yearly CAT scans began – which later turned to full MRIs – which then morphed into Quick Brain MRIs. I don’t remember exactly when these changes in the use of technology came about, what I remember is that when he was really little he had to be sedated so that he would be still for the duration of the scans. Which meant IVs, a nightmare for both of us. Unfortunately, Bug inherited my veins. It’s next to impossible to get an IV into either one of us. One time the team at Stanford (we were in California at that time) tried six or seven times to get an IV into Bug I finally had to put my foot down. Enough is enough already. I was sooo angry. I would have happily stuck the four of them with needles seven times each. What idiots. I was not happy. The scan did not happen and I drove the hour and a half back to my Moms house seeing red.

It turns out some techs are far more skilled at placing an IV than others.

A little over a year after Bug’s first surgery a scan came back with bad news, Bug’s left ventricle was good, but the right was full of fluid and there was a cyst right in the middle of his brain – in his fourth ventricle – that was possibly the reason for the blockage.

Of course my husband took this as confirmation that he was correct in assuming surgery wasn’t the answer. Fighting ensued and he would probably say that I imposed my will on him. Bug’s second surgery was in July of 1999.

I’d like to take this moment to say that my purpose in posting about what’s it’s been like to raise a child with hydrocephalus is not to bash my husband. Our opinions very greatly on how our children should be treated medically, that’s true. And of course I think I’m right. But he also believes he is right. I don’t think he acts or acted out of a desire to harm our child, or to make life harder for me. He believes his experiences with doctors is valid, and that there are different ways to approach medical conditions.

I too, believe that there are other ways, my brother is a Doctor of Chinese Medicine, after all, and treats people with herbs, acupuncture and other holistic treatments every day. But I don’t think my brother would consider hydrocephalus a condition that was treatable using holistic methods. The opportunity for brain damage is hugely daunting. And for me, that’s what it came down to. I wasn’t going to risk brain damage and premature death while searching for a different way to remove a physical defect from my son’s brain.

So at twenty-two months my perfect little boy (yes, I know, I have two perfect boys.) lived through a second surgery where the cyst was fenestrated (shredded) and a second shunt was placed in his left ventricle. I don’t remember as much about that day as I do the previous surgery. I went into the surgical suite with Bug, held him in my lap and sang to him as they used gas to put him to sleep.

One of the things I really appreciate about Dartmouth is their no pain program for children. They didn’t attempt to insert an IV until Bug was sleeping. Once you are relaxed it’s much easier to find a vein and there is less stress all around.

Bug came out of surgery with half of his hair gone and another lovely hat bandage on his head. They released him from the hospital the day after surgery, which of course terrified me. I was worried that I wouldn’t do a good job taking care of the wound and that it would become infected. It didn’t become infected, but at Bug’s six month (from surgery) scan we discovered that the cyst had either healed or regrown.

As the cyst wasn’t an immediate threat to Bug’s brain we elected not to have another surgery at that point. Both Bug’s ventricles were normal now, as the shunt system was doing it’s job. Both tubes attached to a Y that fed into the valve that regulates the pressure in Bug’s head. Another tube led from the valve, under Bug’s skin to his peritoneal cavity and the whole system seemed to be working well.

The following Summer (2000) when our newborn daughter was just a few months old we moved back to California to be near my family. We got the name of a great doctor at Standford and transfered Bug’s care into his hands. Things seemed good. (Except for Standford’s inability to get an IV in Bug without freaking us all out.)

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{ 5 comments… read them below or add one }

Carol March 31, 2012 at 2:01 pm

So glad Bug is doing well. Moms carry so much raising children, when there opposing points of view causes strain, it can be doubly hard. Perhaps it was the pain he knew your little Bug would have to endure was part of his coming undone. You are a terrific, strong and loving woman, Kate.

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KarenB March 31, 2012 at 10:00 am

I’m just sending hugs too. And sympathy for the veins. I’ve got those same veins and they suck. I would imagine they would suck much worse when they are your child’s and you have to watch some incompetent person keep stabbing them.

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Julie March 31, 2012 at 3:54 am

What Judy and Lizzie said. Because I can’t top those remarks.

Think of me hugging you now, mom to mom (even though I’m NOT a very huggy person).

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Judy, Judy, Judy March 30, 2012 at 7:45 pm

I hear your fear and the strength that propels you forward anyway. Lucky Bug to have you.

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Lizzie March 30, 2012 at 1:38 pm

OMG this is the stuff of nightmares. You write so well – (too well !) I am there with you it feels so vivid. I cannot imagine how scary and lonely this has been, such a raw hand bug has been delt too.
Never the less I am riveted by your writing and really wanting to know more.
It is in my own experience nearly impossible to have any distance from your child’s pain or suffering – the mama bear instinct just kicks in. Where both parents share a common belief in the best way forward it can be merely excruciating , when there is such a diversity of opinion it must be hell.
Hugs to you and all your babies.

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