#10

As you know, Connor had his MRI yesterday.   I'm going to copy and paste my Facebook status from last night, because let's face it, it's so much easier.

"When we woke up at 5 this morning I never expected the day to turn out as it did. We had a bit of a rough start, Connor doesn’t really like anyone to touch him that he doesn’t know so it is never fun to bring him to the doctor. Luckily the staff is amazing and knows how to handle children and he was able to be put under without much trouble. There was also no point in time that we had to leave his side, even during the MRI, which of course made me feel so much better. Connor started to wake up during the MRI but they got him back out quickly. While we were waiting for him to wake up, I left Chris and Connor in recovery so I could speak with his neurosurgeon. It felt like forever before he came in. He had such a blank expression when he took out Connor’s films, and then I heard it “It shrank.” That was it for me. I immediately choked up. Not only that but they did his first MRI with his head at an awkward angle which made everything look so much worse. January 16th Connor was supposed to have the decompression surgery with another surgeon. The moment she told me that date I had such a sick feeling in my stomach. I just couldn’t agree. I wanted another MRI. She would not agree with me. She made me feel like I was stupid and crazy. All I wanted was to be sure. Luckily I was able to get Connor in with another doctor. Can you imagine? Connor would have had a piece of his skull and his c1 vertebrae removed that day.  And for what? I know that I do not know everything, and I am nowhere near as intelligent as a doctor. But I know my child, and I will do what I think is best no matter who likes it. It is okay to question doctors. It is okay to get second opinions. Shit, get a third opinion. Do what you have to. You are your child’s voice. Our fight isn’t over. We still have a lot of sleepless nights and migraines ahead of us. We have a sleep study and an ENT appointment to schedule, but NO surgery for Connor anytime soon."

I am still in shock.  I was hoping and praying that we would get good news.  I just can not believe how good the news was.  But with the shock comes the "what ifs"  What if I hadn't questioned her?  What if I let her just open up my childs skull and remove a piece?  For nothing.   I wrote the original surgeron a letter this morning, though I'm sure it doesn't make a difference.

                                                                                                February 19, 2013

"Dr. X,

            If Dr. XXXX has not shared Connor’s MRI findings with you yet, I am sure he will soon.  I am writing to say that even though you would not order another MRI for Connor after I explained my concerns, that I felt in my heart we needed something to compare his original MRI to as well as to get views of his spine, despite you telling me how important it was to do surgery right away.  Even though your nurse called to ask me why I scheduled an appointment with Dr. XXXX , I still held strong and kept  my appointment with him.   We had Connor’s MRI yesterday and all I can say is thank God I did not rush to surgery as you recommended, multiple times.  This is my son.  He is a playful, stubborn and lovable boy with a laugh that is just contagious.  He is not a chart number. He is not a science project or a guinea pig.  This is my baby.   I do not doubt your education or experience at all.  You of course know more than I do, but you do not know more about Connor than I do.  I am sure I am not the first parent  to be uneasy and fearful about this surgery. It is quite a big deal.  I won’t be the last parent to question you either; this is where I make a request:   Please do not dismiss the parents that want to be sure that surgery is the right thing for their child.  If I had done as you urged me to do, Connor would have had decompression surgery on January 16^th for no reason.  My child would have been in pain and risked chances of complications for nothing.    9 times out of 10, you will be correct with your medical findings.  Connor was number 10.  " 

 

 

So where does this leave us?   Connor will be seeing an ENT and doing a sleep study, but other than that we won't be back up to Duke unless something drastic changes.  He will continue on with his amazing Neurologist and we will take things as we always do, one day at a time.