The Monster Hibernates

A very long update on the medical issue that prompted me to start writing this blog in the first place.

It has been 6 months since we last had a radiological imaging done of Jack's head. Jack had just turned one at the time of the last check up. You may recall that our neurologist (Trumble) indicated a follow up schedule doubling the time span after each check as long as the cyst does not change or cause developmental delays or symptoms in little Jack.

Anyone who has a baby knows that 6 months in a baby's life is like an eternity...the changes, developmentally and physically are profound. Also the variation in these changes is so wide across babies that there is such a huge window for what is normal and what is not. It is almost impossible to tell if a baby is "developmentally delayed" or "just hasn't hatched yet" as a woman in the neurologist's waiting room indicated about her younger son while awaiting to be seen with her 6 year old son who we gathered was recently diagnosed with cancer and had just started treatments. For this reason or reasons, the past month has had me quite anxious about the follow up appointment with Trumble and the preceding CT scan.

The MRI was scheduled for Friday morning at 7:30am. We live about 45 minutes from the children's hospital so it was a trek. Susie and I took seperate cars so I could go to work after the procedure. Like two pros, as this was probably our 4th or 5th time going through this, we sort of just proceeded as if things were normal. However, I couldn't help but notice my own inability to cope with the world as a whole in the 2 weeks leading up to the appointment. Every little nuance in Jack's behavior over the past 6 months ran through my mind as I ruminated more frequently up until Friday morning. The fact that Jack held his left arm up while walking and did not swing it as he does his right hand, the increased frequency of vomiting this month, the middle of the night awakenings where he clearly appeared to be in pain (always attributable to gas but never fully), or the very noticeable temper (always attributable to inheritance from his father but nevery fully), or the lack of use of sippy cups still drinking only from bottles (always attributable to a very strong willed baby making a choice but never fully)...all of these and many more behaviors which can't don't mean a damn thing suddenly make you wonder...what if it's the cyst?

Driving to the MRI appointment at 6:30am in seperate cars we realized we are driving in incredibly dangerous weather. Susie calls me on my cell phone and we share information about closed roads and tornadoes heard to be moving through the area already wreaking havoc just north of Orlando. I keep thinking, maybe we aren't meant to get this MRI today after all. We finally arrive after a very scary ride.

In the financial receiving room of the hospital the local news in the waiting room is showing damage and storm warnings as the severity has just been realized and is now a national story. Our focus is again on Jack though and the MRI. We check in and our escort leads us to radiology in the newly renovated hospital which we contributed over the past 2 years at least enough to purchase the flat screen t.v. hanging on the wall playing the movie Cars along with several of the swanky waiting room chairs.

The waiting starts but we are used to it expect it now. Susie and I hold hands a couple of times fleetingly while playing with Jack and hiding our fear the best we know how. Jack laughs and plays not knowing to do any different. This is the best part of this whole thing and we always do our best to keep him from knowing it is different or scary or terrifying for us. After about 45 minutes of waiting, a nurse or tech or someone calls our name. We of course prepare to round up the boy and get this thing over with until we are informed that the MRI machine is down, "due to the storm". Susie and I just stare at each other as if to say, "of course". The nurse/tech offers a solution, which I was surprised by as I've become used to being told, "sorry, there's nothing we can do" by just about everyone in the world of healthcare. The solution was that he would call our neurologist and get the script changed to an order for a CT scan rather than an MRI. The tech bragged that he had Trumble's cell phone number. I think to myself but not out loud, good luck getting ahold of a highly sought after neurologist on a Friday, early in the morning, during a flurry of tornadoes. Within minutes we are informed that the procedure has been approved.

Then the real work begins...I have to try and get this change approved by the insurance company which must preauthorize all procedures (thank you HMO's and US healthcare debacle). Nearly two more hours later we finally get approval to go ahead with the CT scan.

Meanwhile, Susie has gotten to know a man waiting alone with his 5 year old son who appears to have Down's Syndrome. The man has basically talked to Susie, and I have overheard while on the phone waiting for the insurance gods to grant us approval to have our son get pictures of his head, that the little boy also has been diagnosed with some very serious spinal cord problems, and possibly cancer. After the little boy recieves his MRI, that has also been delayed/cancelled due to the machine going down, he is to go and have a spinal tap and see a specialist all of which is getting screwed up by the weather. The waiting room in the radiology department of a children's hospital is probably the most depressing place I can imaging being for 3 hours. The majority of the kids have experienced some sort of trauma and many have been diagnosed with noticable developmental disorders, cancers, and so on. Babies to teenagers and the parents that cope with it all collectively waiting to get help.

15 minutes after approval, I headed into the CT scanner, dawned a radiation protecting jacket and held Jack while he was exposed to the radiation, strapped to a table while magnets swirled around his little head. He cried, stopping only to lear at the source of very loud noises only to cry louder several times. Then, the procedure was over and I wisked Jack away, litterally. I like to pretend I'm saving him so he doesn't think I caused the fearful event...it helps me feel better for a minute at least. Then, as we returned to the waiting room winding down hallways, I repeated to Jack how great he did and how proud I was of him, adding that we were searching for mommy...he laughed, very obviously looking around for his mother. Then, he saw her. All was better again. We left happy but not wanting to appear too happy as several children and parents awaited with their myriad of serious problems still looming in that waiting room.

The next 2 days were extremely long...Susie and I snipped at each other...incredibly sensitive, I realized I just wanted to not talk and just get to the appointment with the neurologist to review the results of the CT scan, but life with a baby does not allow that, and neither does loving your wife. Saturday is a blur. Sunday we took Jack to Universal Studios where he played in Dr. Seuss Land and walked about 5 miles. Then, we went home, put Jack to bed, and watched the Super Bowl. We went to bed and I slept about 4 hours, waking in the middle of the night ruminating about the bad news that we could hear about the next morning. I suddenly realized with full force that I needed to prepare for the worst or I would truly be shocked this time as I had come to expect good news. I began preparing to hear the worst and react in the best way possible for Susie and Jack. I was as ready as I could be.

The next moring we drove to Trumble's office. We waited with the boy diagnosed with cancer (we surmized after talking with the family for about 15 minutes). Susie spoke with the little boys father as he asked if we had been there before, his eyes filled with tears ready to burst as if stored up for months. He wanted to know if we liked the doctor. I suddenly remembered feeling somewhat as he did several months ago when we first learned of Jack's condition which at that time was still without a proffessional prognosis. After a few interchanges we realized that their son was probably beginning cancer treatments, something that put our situation, as crappy as it is, into perspective.

Finally we were called back, waited for Trumble for about 30 minutes, and finally he walked in. He greeted us by saying something like, "I'm so sorry about the long wait....how long was it, how long were you waiting?". Both of us thought he met in his office but then we realized he meant at the hospital on Friday when the MRI machine was done and we had to work out the insurance mess. He actually cared enough to remember. This is a man with who knows how many patients of which a significant number are dealing with issues much more grandiose and traumatic than Jack's. The man is my hero. Especially when he proceeded to say, "everything looks the same...everything is without change...in my eyes we are just doing a well visit".

The man just finished meeting with us saying we would follow up in one year, but in his eyes Jack is in the clear and likely to just have a brain that formed different with a fluid filled sac.

I guess in the grand scheme of things...we are extremely lucky!

Thanks Dr. Trumble...not for what you do for us...but what you do for all of those kids and parents out their who didn't hear what we heard from you on Monday. You are truly amazing!