Shunt Reprogramming

I took Emily to the neurosurgeon last Tuesday for her pre-op appointment and for the doctor to get an updated history on her since she hadn't seen her since early December. After talking to the doctor for quite a while about Emily's headaches and going into detail about exactly how they happen, what Emily has to do to get rid of them, how long they last, etc, I could tell that the doctor was doing some serious thinking and had the wheels turning in her head. Typically, she won't just blindly go in and readjust her pressure settings without knowing what is going on inside her head, but she said that it just really sounds like Emily is suffering from over-draining and she was thinking of going ahead and reprogramming her shunt to give it a shot. The thing is, we already have surgery scheduled and we are keeping it that way for now. The pressure setting on Emily's shunt was set at 100, and she increased it to 130 (I'm not sure of the exact unit of measurement, though). She said that we would know whether or not this worked before her scheduled surgery date of Feb 12. If her headaches completely went away, then we would cancel her surgery. If they didn't go away, or they got worse, then she said that we would move forward with the ICP monitoring and possibly even plan on doing a second surgery later to replace her shunt valve, too.

The reprogramming of the shunt was so simple and totally painless. She brought in this big suitcase type thing that held a large computer. There was this magnetic claw on one end that looked like it was attached to a telephone cord and it had a button on it. The doctor held it against the back of Emily's head where her shunt is. The nurse then entered in the correct pressure setting number on the computer and pushed the button on her end. The doctor then pushed the button on her end of the magnetic claw against Emily's head. It took about 3 seconds and then Emily's shunt was reprogrammed. They did this three times to make sure it was successful. Emily was so thrilled that this appointment didn't include any needles being jammed into the back of her head. And I was thankful, too, since I also had Ethan with me and I wasn't looking forward to him witnessing another shunt tap.

I spent the next few days watching Emily's every move and analyzing everything she does to see how she is feeling. The thing that is amazing to witness is that it appears like her entire personality has changed. The only way to describe it is like a huge weight has been lifted off of her. She just seems happier, so much more full of life. She laughs more, smiles more, and finally is allowed to be a child. I even had a comment from the nurse at school that said that she saw Emily going down the hall and even her voice sounded peppier and she had a big smile on her face. She seems to be more animated. It is like she never knew what it is like to be totally without pain before and is just now experiencing it for the first time. When I think about how long she has been suffering, it just makes me want to cry. It is like she has had a constant amount of low grade pain that she has had to endure at all times, and then when it would increase beyond that normal level, that is when we would know about it and she would have to lay down.

Another comparison that I can't help but make is one from when she was an infant. When she was first born, back before her shunt was ever placed, Emily had an extreme amount of pressure in her head. As an infant, she obviously couldn't communicate to us and tell us what was wrong. One thing we did know about our baby, though, is that she made this grunting sound all the time. It didn't sound like she was in pain, but just a constant grunting sound. We even asked the neurosurgeon from back then if that could have been at all related to the hydrocephalus because Ethan never made that sound. He said no, and that it just must be a noise she made. When our baby girl had her very first shunt placed at four months of age, and that massive amount of pressure, and subsequent pain, was relieved from her tiny little body, the grunting sounds also disappeared immediately, too. Emily never again made those grunting sounds after that. The personality change that I have noticed these past few days after her shunt reprogramming, I compare to the change and disappearance of the grunting after her shunt placement.

Even though her surgery is technically still scheduled, I woke up this morning extremely confident in my estimation that we would be canceling the procedure because she appears to be fixed! She is doing FANTASTIC! She really is. She is even eating better. However, something happened this afternoon that made my gut clench when I heard the words come from her mouth..."Mommy, my head hurts." Now, earlier today she had come to us and asked if she could eat a snack because she said that her head was starting to hurt and she wanted to eat. I stopped her and asked her if her head really hurt or if she was just hungry. I sat her down and talked to her about the importance of knowing the difference. I told her that I don't ever want her to be worried about telling me if her head hurts, but that I need to know for sure if it is her head or if it is from being hungry or something else. Well, at that moment she changed it and said it wasn't her head and said it was because she was wanting to eat. Unfortunately, less than an hour later is when she did come to me with the look in her eyes that is unmistakable and told me that her head was hurting her. I told her to go lay down and it only took her about 20 minutes of laying there for the headache to ease and go away. She is fine now, but my spirits have been dampened a bit.

So, as I sit here, I still can't say right now whether or not Emily will be having surgery on Feb 12 or not. I don't know whether or not I'm making the right decision for my daughter either way. It's a very tough place to be in.