Thursday, September 11

Mom vs Medicine

I feel as though I am a fairly intelligent individual.  When I need to know more about something I do the research or reach out to experts for advice.  Both Jim and I have done our own research during our bedside shifts here at Jefferson.  We are learning more every day about TBI and muscle spasms that they call storming.  We listen to the several teams of docs that are now following Jackie.  We ask lots of questions and seem to agree with most everything that is recommended.  The Mom factor is the tough part to add to the equation.  When you see your child so sick for so long, the Mama Bear instinct comes out full force.  I struggle with the balance between the fact that we know Jackie better than anyone else and the need to let the docs do their jobs.  After all this is what they have studied and have been doing day in and day out for years.  For the most part they do listen to our concerns and ultimately we put our trust in our neurosurgeon who knows Jackie better than any other doc here at Jeff.  Dr. K at Magee knows Jackie best.  It is just hard as a Mom and a Dad to see all the new meds that Jackie is taking and hoping that they are the ones that will make him better.

The early morning hours of Jackie’s day were filled with two major spasms that needed medication to slow down.  We are trying to time doc visits together as much as possible to reduce the total amount of spasms Jackie has each day.  The slightest bit of stimulation sets off a spasm.  Mama Bear enters stage again.  Its so tough to watch the nurses and docs do their jobs when I know the spasms and pain for Jackie will follow.  But I also know what they are doing is necessary to ensure Jackies medical stability.

After the last round of doctors were through it was agreed that Jackie would try a new medicine to help keep his heart rate under control.  Today is the first day for the new drug.

Jackie rested between spasms for the balance of the day.  We were able to talk him through a couple spasms without having to sedate him. PTL In fact we only had to medicate him twice the rest of the day.  The spasms are still happening, but the new med seems to be working already.  The lower heart rate gives Jackie a longer period of time to work through the spasms.  We are hoping this trend continues and we can use pain meds more than the ones that are sedating. We are ultimately hoping the spasms go away.  Even though the docs are not certain, they believe all the surgeries and pain may have set them off.  At this point, the other tests are coming back fine. PTL

Jackie is without question exhausted. When we bathed him he had a spasm and we could see on his thin body the actual tightening of all the muscle groups. I can’t even imagine his pain level.  Our goal is to keep him as positive as we can. He has been through more than several people put together have been through in their lives.  We hope he understands that with time things will get better.

Life is full of surprises and unexpected turns.  Be kind, appreciate days without pain and keep sending positive thoughts to Philly.