We would like to thank you all for your faithful prayers, notes of encouragement, phone calls, etc. The last few weeks – and months – have been frustrating, and our appointment with Josiah’s neurosurgeon yesterday brought some of the waiting to an end.
The reports from his urologist and orthopaedic surgeon came back with notes of improvement in several areas. We were very glad to hear that, and know that the extra time spent in physical therapy has indeed helped. The therapist who administered his muscle test made it very clear that, while the improved test results may not look like much on paper, she was very happy with how well he was doing overall. She noted that he seemed to have more control and awareness.
While Josiah’s neurosurgeon was pleased to hear that there were some improvements in testing, she was quite unhappy with his head measurement. It, once again, went nearly straight up from the last one. On chart, his head measurement is that of a three year old. (I have noticed this at home – putting his shirts on can be quite a challenge!) In addition to the concern over head measurements, she is seeing other subtle signs that are concerning, and she is hoping that surgery might give him the little bit of help that he needs to move forward in many areas – both physically and mentally. She made it very clear that the ultimate choice in what to do is ours, but that she strongly recommends that we intervene.
Our options would be to either refuse to intervene, place a shunt, or do what is called a third ventriculostomy. The goal of this surgery is to pierce the lower membrane of the third ventricle, to allow the fluid to be absorbed by another part of the brain. We have chosen this option. Brain surgery. Even thinking of those two words seems so surreal. I think that, between the reality of what we’re facing and the lack of sleep that we are dealing with, both Casey and I are feeling pretty numb right now. It’s difficult to function. There is risk involved with this surgery… there is a major artery right below this membrane… if it is damaged, the consequences could be very severe – even deadly. You may be thinking “why not go with the shunt?” I think the surgeon summed it up very clearly. The risk of death or serious harm is immediate with the ventriculostomy, lifelong with the shunt. When living with a shunt, the concern of shunt malfunction or failure is an everyday fact of life, also with serious or deadly consequences. Most children have 2 or 3 revisions (replacements.) Our surgeon knows of one patient who had 50. If the ventriculostomy is successful, Josiah may never need further treatment for his hydrocephalus. (I say “may” because we have learned that nothing is “for sure” in the world of a spina bifida patient.)
The surgery date has been set for January 2, barring any health problems. And if all goes well, Josiah should be able to come home within a day or two. (I was shocked to hear that!) If, during the surgery, the surgeon becomes concerned that the procedure may be too risky (or if, over time, it looks as though it failed) a shunt will be placed as our “plan b.” We are thankful to have an opportunity to try an alternative first, but are aware that a shunt is a wonderful medical device that has many benefits.
So – in an odd way, I am almost relieved. The endless waiting is over. I felt like I was standing on the edge of a river, ready fall in, but hoping that my toes might be able to keep me balanced on the bank. Now I’m in the water… the panic over falling is over, and now I need to concern myself with swimming. That may sound silly, but I think it’s a good description of how I’m feeling right now. And numb… but hey – a good mountain stream is usually pretty cold at this time of the year. 🙂
Thank you again for your outpouring of concern. With all that we have been through over the last eighteen months, and the visible “love of the brethren” that has help us through… I have come to see, in a very tangible way, the family that I have in the Body of Christ. It is an amazing and beautiful thing that I am very humbled by!