Neurologist, Pulmonologist, Physical Therapists... Oh my.

We had our first appointment with a Neurologist this week. This was a much- anticipated appointment, as we have been on the waiting list for a few months.

I have immediate angst when we have an appointment with the neurologists and neurosurgeons. All of our appointments are important, but there is an additional intensity when we are dealing with the brain. Just sitting in the waiting room and watching patients come and go, I am reminded of the gravity of our situation. Selfishly, I dread these appointments. To us, our baby is perfect! He is happy. He smiles and laughs and just started rolling. He is engaged and curious and LOVES his brother. We feel so blessed and are so pleased with Shaw’s progress. It is only at these appointments, that we are reminded of our obstacles.

At the appointment, sweet baby Shaw was asked to perform a myriad of tasks that are simultaneously being evaluated. The neurologist is looking for muscle tone, developmental milestones, symmetry of limbs, our medical history, a compilation of notes from our other specialists and probably a million other tiny telling things that I am not privied to.

As a result, Shaw was assigned to the Neurologist’s High Risk Clinic. She wants Shaw to be evaluated regularly by her and a special Physical Therapist. She was concerned that Shaw was not sitting on his own and has ordered an MRI to get a more thorough look at Shaw’s brain. Since Shaw had a brain bleed during birth, given the stress on such a premature baby, she wants to see an MRI and ‘determine what damage was done”. Unfortunately, for an MRI, Shaw must be sedated and is exposed to significant radiation. While Shaw does not have a good history with anesthesia (three out of three times, he has returned on the ventilator); however, he is much bigger and stronger now. Once the MRI is scheduled, our prayer is for positive results and a speedy recovery will follow.

Michael and I discussed the option of refusing the MRI. As I mentioned before, our son is perfect to us, so why would we subject him to anything that may tell us otherwise. After many discussions, we feel strongly that knowledge is power to our family. Our neurosurgeon has mentioned several things that ‘could’ be happening in Shaw’s brain. The only way to determine appropriate treatment and care is to better understand what is happening up there.

Lastly, the doctor has assigned us to the Apnea clinic. Shaw is still on the monitor and alarming occasionally. She thinks Shaw needs to be evaluated by a Pulmonologist to ensure he has not ‘placed out’ of his settings, as he has gained significant weight or if the apnea is a result from something additional happening in his brain.

With regard to sleep, of course I polled the neurologist to see why baby Shaw is waking every three hours and if this is a learned behavior where we can ‘train him’ to  ‘cry it out’. She assured us that the MRI and Apnea clinic will confirm if neurologically he can self-settle. In the meantime, she asked us to continue waking to feed and soothe him.

Sweet Baby Shaw in his hospital gown, waiting to meet our Neurologist.