Dr Pranzatelli and Elizabeth Tate

Tuesday morning, April 16th, we woke up in complete darkness at about 6 am.  Oliver was NPO (nothing by mouth) since another lumbar puncture was planned around 10 am.  We took turns getting ready and keeping Oliver quiet then headed over to the clinic.  We checked in at the outpatient surgery area around 7am.  We were quickly taken back to complete Oliver's pre-op routine.  The whole gang of nurses, were wonderful with our very cranky child.  We even found a MI connection in IL- our anesthesiologist did her residency at UofM.  For the first time, we were encountering people who had an idea what we were up against.  Since Dr P's clinic is really the only center in the US studying OMS, most of the very few kids who fight OMS visit at one point or another.  We, however, had yet to meet the doc and his nurse practitioner Liz (who we later found out is his wife:)...but, we were about to.  When we were finished in the pre-op area, one of the nurses guided us up to Dr P's office where we waited less than 10 minutes before Oliver's exam began.

Dr P and Liz came in together and wasted no time getting to work.  Dr P began asking questions while Liz set up a tripod with a video camera trained on Oliver.  Taylor answered most of the doc's questions (I interjected some, of course;) and I worked with Liz to try to get Oliver to perform the tasks they needed to see as a baseline for their video.  At one point, Dr P asked how Oliver most liked to be held...I said against my chest.  He asked if "velcro child" would be an accurate description.  I'm pretty sure I laughed out loud because, he nailed it.  As the questions went on, we began to feel more confident that we were in the right place.  Dr P and Liz knew everything we were experiencing.  The rage, the restless sleep, hitting, loss of speech, coordination, eye movements, tremors, all of it.  While the interview was happening between Taylor and Dr P, Liz was trying to get Oliver to perform basic tasks like reaching for things, stacking blocks, throwing.  Ollie was the least cooperative he had every been at that point.  Looking back, I think he may have been fighting a virus as he had a low grade fever all day and his behavior was far worse than ever before or since.  We moved out into the hallway so they could see him walk, crawl, ect.  They asked to have him pull up on me from sitting.   He ended up kind of melting forward and just lying there crying and defeated.  I had tears in my eyes when they told me to go ahead and pick up him (it was seconds, but felt like FOREVER).  Our confident and capable little man was gone in that moment.  We clung to the promise that he would be fully restored to keep our minds clear.  Following the exam, we were escorted back down to the outpatient surgery area so that Oliver could have his spinal.

The nurse reminded us that one of us would need to say on the premise at all times since he is a minor, but directed us to different places to get lunch.  I made a joke that all I really wanted was a bed.  They took Oliver back and shortly after a nurse came out and said they had a room prepared for us if we wanted to take a nap.  The door had a sign on it saying it was in use by a family.  Inside, two fully reclining rockers, bedding, and a TV.  Needless to say, it looked like a slice of heaven to us.  Taylor left and grabbed us some lunch- by that time it was tough to determine which basic need was more urgent- sleep or food.  The team in that clinic was phenomenal.    They updated us all along the way.  Dr P came in after the procedure and spent 30 minutes with us talking about the treatment protocol he recommended and answered our litany of questions.  He also called in a script for Trazadone which is a serotonin inducer and would help him sleep at night.  The goal was for Oliver to sleep 10 hours a night uninterrupted.  This would be restorative sleep which would not only help him heal, but also greatly reduce or eliminate the rage.  Oliver was still asleep after the procedure, so his recovery nurse told us to go ahead and sleep, that she would wake us when he was up.  I think Oliver was as tired as we were and let us nap for a couple of hours!  The nurses there that didn't know about OMS were looking it up on the internet, the others called Ollie one of Dr P's kids.  We were so impressed by the caring and personal attention given us and our son by these wonderful people.

When we woke up, we headed back to the Ronald McDonald House.  Oliver was restless and wanted to be outside despite the rain.  Eventually, a lovely group of people from a local church came in to make dinner for the residents.  We hung out in the kitchen with them and enjoyed the conversation and the food.  I never really thought much about RMH before, but like many people I assumed lots of kids stay there.  As it turns out (and it makes sense), very few children are ever at the house- in the case of the Springfield house- they are usually there for the OMS clinic.  The RMH staff knew Oliver was there to see Dr P, they also understood the condition.  At this point, it was very comforting to have someone understand without having to explain what was going on.  One of the staffers said it best, they are there to care for the parents so the parents can care for the kids.  The impact RMH and its staff made on us in that two day stay was huge.  We are looking forward to being able to serve in our local house once Oliver has recovered.  We have begun collecting pop can tabs to donate as well.

We gave Oliver his first dose of Trazadone that night.  He still slept between us, but he was peaceful that night and slept for 8 hours, I think...the next day we headed out after breakfast...