February 17, 2008

Neurosurgery Update

Friday was our follow up appointment for the last surgery Niklas had at the end of October. Until now, he has had no problems with getting a CAT scan. This time, his little lip started quivering as soon as he was laid on the table. Shortly after, he started to panic. The more he panicked, the more he had to be restrained. The more he was restrained, the more he panicked. Eventually, he calmed down and the necessary pictures were taken. Niklas is a tough boy, but next time he will have to be sedated.

It seems as if we haven't received a conclusive report about Niklas since we learned of his condition last January. It's been an intense game of watch and wait. What I would really like to hear when we visit neurosurgery is "Everything looks great, see you in a year", but overall, things looked pretty good. The reason for the last surgery was to connect a bubble of non draining fluid to the area drained by the shunt (the ventricles). This bubble of non-communicating fluid was much smaller in Friday's ultrasound (good news!), however, the ventricle into which this fluid drained is now slightly larger. Dr. Maher explained that most likely this is simple physics at play. The fluid drained from the bubble into the ventricle and what we see makes perfect sense (even to me). Dr. Maher explained that his job is to take into consideration the chance that the enlarged ventricle is from another cause and to keep an eye on it. This is what I want from a doctor, someone to watch my kid like a hawk and make sure everything is the way it should be. So, I guess I'll let him worry about it since Niklas is doing fantastic, and that is all that really matters.

There were a couple other minor things brought up in our visit. First, Niklas's head chart showed a small spike. He is still in the 40th percentile, but this particular chart shows an increase. This doesn't bother me at all since head measurement tends to be so inaccurate. I am certain that the head chart at UM Neurosurgery looks completely different than the one maintained by our pediatrician. Not to mention Niklas hates having his head measured and tries to wrestle away the entire time. Each time it's a different nurse measuring the circumference in a slightly different way. Lastly, Niklas's shunt setting mysteriously moved (click here for previous story) from 1.0 to 0.5. Again, not a huge deal, but Dr. Maher says he never sees these things move and this is our third little incident like this. We both agreed that this does not warrant a surgery to replace the valve. Luckily, we now have the tools to monitor this situation.


Anonymous said...

That just tore our hearts out to see Niklas upset. We will continue to pray for all of their health and are so happy to hear that over all, things are going so well. We look so forward to checking this update on Sundays! Lisa D.

Anonymous said...

I don't like that picture of Niklas in the CAT scan, it makes me sad. The babies are in our prayers, give them lots of kisses for us.

Love Auntie Sarah and Uncle Adam

Kevin Currie said...

Hang in there Niklas. You are the strongest person that I know. You will be able to accomplish anything that you want in life after going through all of this at such an young age.

The Godfather

Anonymous said...

Niklas, we are so proud of you. I don't blame you for being so scared after all you have been thru. Lots of hugs and kisses.


Shannon said...

Poor baby but poor parents too! It is so sad to see your little ones scared.

Just saw your MOD link and feel like a louse for not setting mine up yet. Thanks for the kick in the pants!

Anonymous said...

My heart goes out to you and little Niklas. May his hydro stay at bay and keep the little guy strong. Maybe the sedation will be a blessing in that they will opt for an MRI and spare him some CT radiation?

Meva... fellow parent of a hydro kid.