We rarely think about Niklas's shunt anymore, but 2 occasions remind us it's there...
- Wipe Outs - Niklas has many strengths, but grace is not one of them. Every time he falls down and whacks his head we think "Ouch, I hope he didn't damage the shunt".
- Puking - One of the signs of shunt failure is vomiting. As luck would have it, Niklas is a puker. He is much better than he used to be, but he is still the most likely to throw up although it has never been shunt related. Nonetheless, everytime he heaves we can't help but wonder.
Today we had an incident, but some background first. Niklas has Hydrocephalus, which is a condition in which cerebral fluid does not properly drain from his brain. Left untreated, fluid buildup would cause cranial pressure and would eventually be life threatening. To treat this condition, Niklas has a shunt or valve that drains this fluid from his brain into his abdomen. Niklas's first shunt failed and was replaced with an adjustable one that drains fluid when pressure in his head reaches a certain point. This threshold for drainage can be adjusted using a powerful magnet the size of a stereo knob. This device has settings ranging from 0 (the most drainage) to 3 (the least amount of drainage). Niklas's setting, for the most part, has been 1.0. In the first few months following the implantation of this device, it mysteriously changed settings. You can read more about that here.
Naturally, Greta and I became mistrustful of this device and were always second guessing things. We figured life would less stressful if we could obtain the device used to check the pressure setting. Basically, this kit consists of a magnet to adjust the shunt and what amounts to a compass to measure the current setting. As described in the previous post, this device is considered a "Medical Device" by the FDA and is not available to patients. The fact that diabetics can control their condition but hydrocephalics cannot even monitor theirs infuriates me to no end, but that is another rant. Greta, however, is from Europe and a couple of phone calls enabled us to get our hands on the "goods". We have periodically checked his setting over the past 7 or 8 months and it has always remained constant.
Ok, on to today's incident. In our closet we have a shelf. On top of that shelf lies a very powerful refrigerator magnet which I had forgotten about (I tried to get rid of all magnets in the house because of Niklas). Our kids rarely go in our bedroom, and have never been in our closet until the past week or two when Niklas and Lukas discovered the shelf. Yesterday it dawned on me that while playing with the trinkets on the shelf, Niklas would have been in close proximity to that magnet and it could have messed with his shunt. Since we hadn't checked the setting in a while I told Greta that we should probably do it in the morning.
So, this morning I measured the setting of the shunt only to discover that it had jumped all the way to 2.5 from 1.0. I must have rechecked it 100 times to verify things, but I kept getting the same result. At that moment Greta and I were overcome with the feeling of being run over by a truck. You can't help it, these kind of things just ruin your entire day. Although I have the tool to adjust things, I am not a neurosurgery expert. The fact that the setting changed necessitates a trip to the hospital in my opinion. But since we were going there anyway, I figured I'd adjust the shunt myself just so I can have confidence in doing it. We are going to Europe this summer and Greta may stay for a month or longer. If something goes awry while she is there I would like to know that we can temporarily adjust things until we get back. Frankly, it couldn't be more simple and I had no problem setting things back to 1.0. We made the trip to neurosurgery and their measurements confirmed my adjustment. They proceeded to tell me that the more they learn about this particular shunt the less "accurate" they perceive it to be. No two measuring devices read exactly the same and factors such as the patient lying in different positions can cause different readings. In fact, this particular device seems to be more prone to overall failure. Its disconcerting to know that a revision is almost inevitable.
The good news in all of this is that Niklas didn't seem to be affected by his shunt changing its setting. Part of me likes to believe that maybe he really doesn't need the shunt and that the fluid is being absorbed naturally by his body. This is not out of the realm of possibility, but it is very rare. In any event, I thank God we have a malfunctioning shunt as opposed to a malfunctioning boy.