This blog was created to document our experience dealing with Bailey, our 16 year old daughter's stroke. Until September 15th, she was a perfectly healthy, active teenage girl. She is a junior in high school this year. She has a part time job, many friends and a busy social life. She is involved with the marching band, cross country skiing and the school theater group. Her class schedule reads like that of my nightmares - Honors classes, Advanced placement classes and even a "college in school" physics class. She has a smile that shows itself with the slightest of provocation. She is happy, easy going and a bit goofy. Generally, there was no reason to expect any health issues and definitely we would not ever have even thought a stroke was a possibility.

So, this is our story. I am hoping it will help others who experience this sort of misfortune to understand they are not alone. Maybe they are feeling the way we do and will take some comfort our story.

Saturday, September 18, 2010

The Real Diagnosis

On Friday morning the Psychologist finally came to see Bailey.  It was her job to tell the internist whether she thought it was psychological or if she felt that they should continue to look for an organic cause.  She spoke to Bay for about 20 minutes and then spoke to Paul and I.  She asked us the same history questions that everyone else had.  In the end she said that she was going to talk to the primary physician and they would let us know where they would go from there.  I wasn't at all happy with the idea of there being a top secret meeting where they would chat about things and figure out how to sugar coat it before they filled us in, so I pushed her to tell us what she thought.  She said "It is hard to tell.  It really doesn't seem like it is Conversion Disorder."  She said that she thought they should have the Neurologist take a look at her.  She also thought that an MRI would be a good idea.

We were pretty excited that they had decided to move forward with the MRI.  While we trusted what they were telling us we really felt like ALL organic causes needed to be ruled out and the MRI was the last piece to our puzzle.  While deep down we all sort of hope it was truly a psychological issue we weren't going to be satisfied until we knew for sure.

So, the waiting began again.  We were told that the Neurologist would be in at around 2:30 and I didn't believe it.  We had had too many disappointments so far but just to prove me wrong, she showed up at 2:30!  This was the first doctor we had seen that was older then either Paul or me.  Paul had said earlier in the day that he just wanted one doctor that was older then him to tell us what was wrong.  Up until now we had seen so many med students and residents that looked like they could be in Bailey's classes at school that it was very nice to have an actual adult doctor (not to say that Dr Kirven isn't an adult - he is probably in his 30's).  Dr Espinosa (Neurologist) went through the litany of history questions per what was now seeming to be protocol and she had obviously bought into the whole "it's a Conversion Disorder" deal.  She said that it seemed like we understood what it meant and what the treatment plan would be.  Then she did an exam of Bailey.  She did the same "bedside tests" that had been performed by each of her predecessors.  She asked Bay a ton of questions while she was doing the exam.  Both Paul and I felt like it was just for show.  It really seemed like she had made up her mind that it was a Conversion Disorder.  Well all that changed after experiencing Bailey's answers to questions and her aphasia problems.  Dr. Espinosa looked at each of us and said "I am glad we are doing this MRI."

I pushed Dr. Espinosa the same way I had pushed the psychologist - no top secret meetings, give us the straight scoop.  She said that she really didn't feel like this was Conversion Disorder.  The symptoms were too erratic - they seemed to wax and wane - and the aphasia was pretty severe.  She then left to call Dr. Kirven and tell him what she thought.  They scheduled the MRI for the evening because that was the soonest they could get her in.

Dr. Espinosa came back to see us after speaking to Dr. Kirven and I told her that we wanted the MRI results as soon as possible.  If that meant we got them at 2:00 AM then that is when we got them.  We did not want to wait until the next day.  She said she would do her best to make that happen.

We got back to Bailey's room at around 11.  They had moved her into one of the newly remodeled rooms at Children's.  It was super deluxe and actually felt like it had enough air in it for me to take a full breath.  I was starving so we ordered a pizza.  It all seemed so normal, except for my baby girl lying in the bed unable to do much for herself or communicate what she wanted in a way that could be understood without some prompting.  We were ready to start the waiting game again.

As it turned out we didn't have to wait very long.  A new doctor, one we hadn't seen before, came in at around midnight and asked if he could see us.  I said "come in."  He said "alone."  We took what felt like a very long walk filled with doom down to a semi-secluded sitting area down the hall.  He then proceeded to walk us back through the path we had taken in the past 3 days.  Why they had done what tests, what they were looking for, what they had found, why they had decided to do the MRI and lastly, what they had found.

Our healthy, active, outgoing SIXTEEN year old daughter had had a STROKE.

Dr. Melchert went onto explain they type and the cause.  It was a Middle Cerebral Arterial stroke caused by a dissection of the artery.  He drew pictures and explained it in full detail while Paul and I sat there listening in shock.  We had hung our hats on the Conversion Disorder.  As hard as it was for me to accept that my daughter was holding so much stress inside that it had manifested itself in paralysis it was even harder to swallow that she had had a stroke.  This made no sense.  There is no family history.  There were no warning signs.  This just wasn't possible.  How could this happen?

Mainly we wanted to know how they had missed this on the CT scan.  Dr. Melchert explained that when he had gotten the MRI results he went back to the CT to have another look because he couldn't believe they would have missed that much damage.  I asked him if this would have shown up on the CT and his answer was "absolutely."  He said that the only explanation was that she had been having TIA's prior to admission and then sometime after the CT and CTA the real stroke had happened.  They couldn't pinpoint when but it was certain that this stroke had not been what caused her initial symptoms.

Dr. Melchert then told us that he thought our immediate plan needed to include transferring Bailey to the Stroke Ward at Abbott Northwestern Hospital.  They were the experts.  This was the best place for her.  We told him to make it happen.

Well you can't just walk her across the street and the tunnel that connected the two hospitals was not an option because there is no support in case of an emergency so Bailey got to take her third ambulance ride in as many days.  So at 2:00 in the morning the nice guys at LifeLink drove her the .7 miles around the block and took her to the ANW intensive care unit.  She would spend the night there and then be transferred to a room on the stroke ward.  Our night in the ICU was short but it was clear right away that the folks at Abbott knew what they were doing.  They were thorough and seemed to have a sense of urgency that had been lacking in our adventures up to this point.  They got her settled in and told us to go home and get some rest.  I was reluctant to leave but there is no guest bed in the ICU room so I really had no other choice so I left.  It was the first time in 3 days that I had left the hospital.

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