Deja vu 2

We are down at Cook's Children's hospital in Fort Worth again. Last year we tried two different electrode locations with Deep Brain Stimulation. Both showed some promising improvement for a time, but in each case and with each adjustment the trend was for his condition to gravitate back to the baseline. There were a lot of emotional ups and downs.

Last spring it was suggested we try a Baclofen pump. Baclofen is a muscle relaxant used to help control muscle spasticity. It can be taken orally, but typically for strong spasticity as one might find in Cerebral Palsy or Multiple Sclerosis (or Adam), one can't orally take a dose large enough to get the levels needed in the effected muscles. So instead a smaller dose is pumped directly into the fluid surrounding the spinal cord. Before actually inserting the small pump under the skin, the patient's response to the drug can be tested. That brings us to where we are today. Adam had a very short surgery this morning where a catheter was inserted in the fluid filled area around the spinal cord. He can then be given baclofen in a manner similar to having an IV and see how it goes.

This is actually an older more classic procedure than Deep Brain Stimulation. Some doctor's might have done this first, but there are pros and cons. The Baclofen pump is less targeted (for instance, one can't just send the drug to one side of the body). The Baclofen pump has been around a long time and is considered very safely reversible if it doesn't work out.

We have been quieter about this trip than probably any of our others. Experience has taught us to be careful of managing expectations. The surgery itself went fine and Adam has been re-cooperating today. He has had some pain off and on but that is not unexpected. They did start some Baclofen late this afternoon but it is too early to judge things at this point. We are here and tired and we appreciate everyone's thoughts and good wishes. And we are enjoying unseasonably cool, rainy conditions that only happen a few times a century in Fort Worth in July (two consecutive days of highs in 70's with light rain and no sun all day).