Still waiting to be transferred to Children’s Hospital. Thought I’d take the time to explain it all to you.

For at least a month prior to Amanda getting pneumonia, I just had a hunch that something wasn’t right. She was hard to wake in the morning, napped a lot in the afternoon, and her eyes were doing funny things (nystagmus if you want to look it up). Since leaving the care of Children’s Hospital at age twenty-one, we’ve been fortunate not to have to need a Neurosurgeon. Amanda has a shunt in her head and has had more neurosurgeries than I can count. But we never found another neurosurgeon to see. I recently discovered that the neurosurgery group she once saw will keep seeing their young spina bifida patients – even as adults. They will even do surgery on them at Children’s. I actually made an appointment for Amanda to see them the end of this month because of my concerns.

Now when shunts plug up and do not drain right they can create all kinds of symptoms. Many of the symptoms are the same as the Chiari malformation I spoke about in a previous blog. Just keep in mind that both of these are conditions that affect the central nervous system … like consciousness … and breathing … and eye movement … and swallowing … etc etc. It is my gut feeling that Amanda has something neurological going on that is making her sleepy, making her eyes wacky, giving her a fast heart rate, and depressing her breathing. I don’t deny that we just got her through pneumonia, but I believe that these neurological symptoms exacerbated and made her pneumonia worse.

The pulmonary doctor here is wonderful and renowned. He has done everything he can for Amanda short of giving her a tracheotomy and sending her home on a ventilator. That’s what he thinks she needs next for proper lung function. Ted and I say (to ourselves) that he is treating the symptoms and not the cause. I think we have to explore the neurological factor because if her breathing is shallow, if it is absent at night (sleep apnea), and she has a sleepy level of consciousness, then of course it will contribute to poor lung function. You have to be awake and breathing and breathing deep in and out for proper lung air exchange.

Maybe Ted and I are in denial. But Amanda simply has no history of respiratory problems except for this pneumonia and the last time she had it, five years ago, when she bounced back strong. How could she go downhill so quickly unless there were other contributing factors? Ted mentioned to me that the pulmonary doctor here is probably used to treating old people in end stage lung disease. Our hope is that we can get a neurological solution at Children’s and if it truly is a lung issue, maybe we can get some insight and treatment from a pulmonologist at Children’s who is used to seeing kids like Amanda with multiple handicaps?

That is why we are going to Children’s. Amanda is still retaining CO2 at a dangerously high rate. We must look at her neurological system to be sure it is all working right to give her the best chance at recovery. If it is not a neurological issue, then we have to accept that her small lungs are finally getting tired of working so hard. Then we may have some decisions to make. But like Ted said, “One decision at a time.”

Just Laurel