Saturday, November 5, 2011

48 Hours

I recall Eddie Murphy and Nick Nolte getting into an awful lot of trouble during their 48 hour stint years ago. You may recall that Nick was a rough cop who sprung Eddie out of jail for a couple days to track down some bad guys. Car chases ensued as I recall.

Spike could certainly use a couple days of fresh air freedom but that's not likely to happen. The next 48 hours will simply be a pause in tests and procedures as, hopefully, doctors, nurses, techs and everyone else who supports Spike medically take a rest and get ready for the Big Event on Monday.

We have been quite successful at moving Spike rapidly through the medical process ever since he got ill last January. At times, we have accomplished in days what normally takes years. The upside of rapid movement is quick diagnosis and treatment or, more often the case for Spike, quick elimination of potential causes and trials of therapies that have proven ineffective. The downside of such speed comes now when it feels like we are moving extremely fast towards a brick wall.

There will be a lot of hand wringing and teeth gnashing over the weekend but, in truth, we have done all we can as parents and the decisions are now mostly on predetermined paths. While there will have to be the critical go/no go decision on Monday based on analysis that is not yet complete, I really don't expect that a whole lot of judgement on our part will be needed. The time for careful weighing of options has passed. The doctors will either decide they can safely and effectively operate or they will recommend no further surgery due to the risk of functional loss. I cannot see overruling either decision. Spike had 35 seizures yesterday and another 23 before 8 AM this morning. If treatment is likely to be successful, it must be pursued. If surgery is thought too risky by the medical team, they would not go forward regardless of our view.

Of course, knowing this and living it minute to minute for 48 hours are two completely different concepts. I will continue to research everything, ask a thousand questions and insist upon seeing even more specialists. The medical team would probably appreciate (and it would be best for all concerned) if we would just go for a walk instead but that's not how it works with parents and their children and the team knows that so they will patiently answer all the questions. (Late yesterday, the (amazing) nurse practitioner and neurology fellow spent an hour with us answering dozens of new questions and showing us pretty pictures of the brain.I think they knew that this would give us a dozen new avenues of research to pursue with the goal of simply keeping our own brains occupied. A future post will show those pictures and describe the topography of the brain.)

We have given Spike access to the best medical care available not once, but twice. Other than the seizures, he is healthy and strong. We are aware of the risks and opportunities. After a weekend spent worrying and simply keeping an energetic (but no longer hyperactive) four year old boy occupied while he lies in bed tethered to equipment, it will be time to listen to the final recommendations of the doctors and either sign the surgical consent form or leave the hospital with no other options. In reality, although the pen will be in my hand, those choices will be made by the expert analysis of world class medical specialists, not parental judgement. That should calm the mind. Of course, it does not.


  1. My dear friend,

    The only thing that will calm your mind and spirit is realizing that the outcome is neither in your hands nor the doctors, but in the hands of the Most High God, who has every detail, to the nth degree, under His sovereign control.

    I know you struggle with this concept, and ultimately, none of us "knows" conclusively if it is true or not, and by the time we DO find out, it will be far too late for earthy confirmation. But I've seen it proven too many times not to believe it is true.

    You have done everything humanly possible to confirm the best path forward for Spike. You must now find a way to trust: your efforts, the medical team, and (IMHO) God. The outcome will present you with new challenges, hopefully the worst of which is half-day or full-day Kindergarten! However, if the challenges continue to be in the management of Spike's medical journey, please know that you are the best First Mate God could've chosen!!

    Please know I pray for all of you throughout the day, and I trust that somehow, each of you feels surrounded by the love, care and concern that are carried on their wings.

  2. Thank you for sharing. It is a lonely place where you are and your mind can run through hundreds of possibilities.

    I hope you can relax a little tomorrow. Your assessment of the options sounds spot on.

    My best wishes,