Preparing for big party

After we got Bay dressed in her new party clothes we decided to go for a walk.  She wanted fresh air and sunshine so we went out on the deck that is just off of the ward.  It wasn't sunny out there but we hung out anyway.

She wasn't real happy with my documenting "the chair."

So I zoomed in so you couldn't see it...

The patio here is more of an inspirational garden then a deck.  It is very pretty.

The flowers and reflection globes make it a happy colorful place.

The sass and sarcasm add to the ambiance even more.

Red - one of our favorite colors.

After a while we got cold so we decided to go inside.  We ran into Monica (aka "the one that I like" per Bay) in the hall.  She said that if we wanted sunshine we could go out into the courtyard between the hospital buildings.  So we made her pose for a picture and away we went.

This is Monica.  She has been our nurse for 7 of the last 8 days.  Sometimes for 24 hours at a time!! It is crazy.  The nursing shortage is very obvious here.  Not because we are receiving bad care, quite the contrary, but because the nurses work ridiculous hours.

After our hallway photo session we headed for the sunlight.  Bailey was obviously pleased.

Mmmmm...nice.

We had a few visitors in our little corner of paradise.

This dragonfly is actually sitting on the surface of the water.

The birds aren't shy in this area!

Neither are the squirrels.

This little guy would not cooperate for a photo.

I am not sure which was brighter - my girl or the sun.

After our big adventure it was time to rest up for the party.  So we hung out in her room for a while.

Then off to the party.

Picking out birthday cards

Since I have already given Bailey the present I got her (an iPod) and she told me that I should not spend any more money on her I thought I should at least get her a card.  This seems simple enough, right?

Well, let's just say that today was Target Shopping Meltdown #2.  By nature I am a sentimental person.  I cry while watching commercials, sappy movies and sometimes just when I see something lovely.  Today I had a really bad case of the saps.  I started reading birthday cards and the waterworks couldn't be stopped.  So many cards with so much love in their text.  How to pick one? 

The problem is that they don't make a card that says what I want it to say:

"You are strong, you are lovely, it sucks that your birthday this year is in the hospital but next year will be better.  You are more awesome then I already knew."

A helluva way to celebrate a birthday

Monday is our Bailey's 17th birthday.  Spending it in the hospital is not her idea of a great celebration and she has made sure I know her opinion of it.  We are having a party for her tomorrow but she has a few opinions about that as well.  She says "I don't want gifts."  I asked her why and she went on to explain how she thinks people will give her presents that are "all like get well Bailey" and not "happy birthday Bailey."  She has it in her head that these two things need to be kept completely separate.

I didn't really understand this until I was relating this story to my sister Amber who asked me if I thought it was more about the type of gifts?  Maybe she thinks that the presents will all be "in rehab" gifts instead of "post rehab" gifts?   I think Amber is onto something.  It makes sense when I recall other conversations I have had with Bay in the past few days.  I had several coupons for 10 dollars off at Kohls and I told her I was going to buy her some t-shirts and work out clothes for rehab and she told me no, that she wanted "after" clothes.

I wonder if this is typical of people in rehab?  Or is it just my girl who thinks this way?

She is loved

Today I was talking with one of the nurses about the large amount of visitors Bailey has had since entering the hospital.  They were actually lecturing me on her having too many visitors.  I explained to them that she is truly happiest when surrounded by her friends and loved ones.  They said that they understood that but it was important that her brain be allowed to heal and that it couldn't do this if it was constantly being overstimulated.

The way they explained this to Bailey was that when you break a leg the doctor puts it in a cast and tells you to not use it if 6 or 8 weeks.  Basically it is like you don't have that leg for 2 months.  Well with your brain they can't cast it and you certainly can't not use it for 8 weeks so instead you need to use it less then you usually would.  This is so hard for Bailey to understand.

What is hard for me to understand is how such an outgoing and obviously popular girl came from parents who were so awkward is school.  I was not popular and certainly didn't have many friends.  Paul was shy and awkward and had a limited amount of friends as well.  How did we produce this girl?

I had my son look through the guest book to count how many unique visitors (some have come more then once) Bay has had since the 15th and she has had EIGHTY SIX!!  Yes, 86 unique visits.  That is crazy!

She has so many great friends!  They are so supportive and they make her smile and laugh in a way that her dear old dad and mom aren't able to.

So, to you, Bailey's friends - THANK YOU for being there for our daughter.

Homecoming dreams and homecoming dresses

The staff at the hospital has said that by the time of the Homecoming dance I will be allowed to take Bailey out on a 2 hour pass so that she can at least go to the dinner portion of the evening.  She has very specific idea of what her dress needs to look like and she has been telling me about it for months!  I can't even fathom pulling out my sewing machine at the moment so I was all set to disappoint her and tell her I was going to have to buy her a dress.

But today we had a visit from Becky Shold Strom.  She is the mother of Bailey's friends Erica and Rachel.  She is going to make Bailey's Homecoming dress for us.  I can't even find the words to describe how I am feeling right now!  Now my girl won't be disappointed! 

Thank you Becky!  We love you!

Physical therapy

Bailey had a Physical Therapist today that had not seen her since the beginning of the week.  I told her that it seemed like Bailey was making a lot more progress then one should expect.  She told me that Bay is about a week and a half to 2 weeks ahead of where they thought she should be by now!  My girl the overachiever strikes again!

Our first full day of therapy

The way therapy works at SKI is that they provide the patient with a schedule for the next day.  It gives the time of each appointment, how long it will last and who the therapist is.  .Her first schedule looked intimidating and as it turned out was quite intimidating.  She had physical therapy twice today, occupational therapy twice today, and speech therapy once.  She starts at 8 AM and goes til 4 PM.  She gets about 2.5 hours off during that time.

It was a very long day and she was super tired afterward but seemed even more determined to keep up the hard work.

We did have one small crisis today.  During her morning occupational therapy session her therapist helps her get ready for her day.  They brush her teeth, get her dressed, brush her hair, and eat her breakfast.  They basically help her to regain her day to day independence.  Today was supposed to be shower day but Bailey wasn't quite ready to let some total stranger help her bath.

After OT was over Bailey called me very upset.  She told me that her occupational therapist was very mean.  I asked her what Michelle had done that was so mean.  Bailey's answer was "She watches me do everything.  I don't have any privacy.  And she thinks I am gross."  I was not at all surprised that her therapist was watching her every move, after all, that was her job but the gross thing was a bit worrisome.  I pushed further to have her explain if her therapist had actually said she was gross and it turned out that Michelle had been teasing Bailey about her hairy legs.  (Note: You can't use a razor when you are on the amount of blood thinners that they have Bay on at the moment)  Michelle had no idea that this was a sort spot for Bay so she didn't realize she would be so sensitive about it.  I explained to Bay that maybe she took it wrong because she was tired.  She agreed that it was likely the truth.

Other then being told she was gross and being completely exhausted the day went well. 

When it came time for me to leave I was a bit worried that we would have another meltdown like the night before but she simply said "OK" and reached for the button to lower the head of her bed!

Overall, it was a good day!

Our first night at Sister Kenny (SKI)

Most of the day we just sat around and did nothing. It was a transition day so no therapy was on the schedule.  We moved into her room, fussed with the lack of space and arranged things as best we could.  While it is not as glamorous of accommodations as we had grown used to, being on the Neuroscience Ward, it would do.  They told us she would spend very little time in her room anyway so she wouldn't be too claustrophobic.  I have my doubts!

She has a room mate in her new room.  A 27 year old that stroke while under anesthetic to remove 3 brain tumors.  She is chatty and seems to be in good spirits.  She and James hit it off right away - seems she is a very big Slip Knot fan just like him.  Since she has left sided paralysis and Bay had right sided we decided that together they were two halves of a whole and would be unstoppable in a three legged race!  I am glad she got a room mate that can still laugh after facing so much adversity.  I know it will help Bailey to keep up her positive attitude.

Most of the day was pretty relaxing and enjoyable.  We are allowed to take her off of the ward so we did some wandering around the hospital, which was fun.  She seemed to enjoy being out of her room.  Since we are not allowed to sleep over with her the end of the day was a bit tough.  She didn't want us to leave and we sure didn't want to leave.  The idea of leaving my baby alone in the hospital with strangers is one of the hardest things I have ever done and here I was doing it for the second time in a week.

She seemed OK when we left but an hour and a half later she was on the phone having a meltdown.  She was scared and sad.  She had dozed off and woke up looking for me.  When I wasn't there she freaked out.  I managed to calm her down talking to her about why she was in the rehab center.  What our goals were and what she wanted to do - COME HOME.  She had said earlier in the day that she wanted to walk home so I told her to close her eyes and see herself walking out of the hospital and to the car.  I told her to repeat "I will walk to the car" over and over and over.  I told her to see it, believe it and set her mind to that.  I told her to remember that this was what being in the rehab center was for and that she was strong and could do it.

I managed to get her to calm down and go to sleep.  I wish I had been able to go to sleep.  I woke up every two hours looking to see how she was and when she wasn't there I came close to my own meltdown.

Another big move

Today Bailey will be transferred to the Sister Kenny Institute. It is an inpatient rehab facility where she will have daily (Monday through Saturday) therapies.  They will include Physical, Occupational and Speech.  Sister Kenny is set up with room that are more like itty bitty studio apartments then hospital rooms.  They try to instill some sort of independence in the patients while working on the physical rehab.

The only really sucky part is that I am fairly certain they are going to kick me out every night.  I will no longer be able to respond to her cries in the night and rub her back when she gets scared.  I am having a hard time swallowing this.  I may have to hide in the bathroom at bedtime and sneak out to sleep on the floor in her room!

I am told we can get evening and weekend passes to take her off the unit.  Not necessarily out of the hospital but we will at least get to give her a change of scenery.

Another surprise in our diagnostic world

On day three in the Neuroscience Ward they finally got a copy of the MRI films from Children's Hospital.  Dr. Dove (Bay's Neurologist) had not seen them yet so Dr. Kirven asked him if he wanted to have a look.  I asked if I could see too - and of course they couldn't say no.  So, off we went to view the "films."

In hindsight this was not a very good idea.  The amount of damage to my girls brain versus how she seemed can not be reconciled in my brain.  How could she lose the use of 1/3 of the left side of her brain and still sit up, talk, laugh, and smile with that much damage?  This made no sense.

Of course when the neurologist looked at it what he saw was something entirely different.  I guess it was more like what he didn't see - a dissection.  He wasn't at all sure that what he was seeing was a dissection in either an artery or a vein.  So, he ordered another CT and CTA.

They did the CT/CTA and said that they still weren't positive that it was a dissection because it was possible that at the moment they did the CT/CTA it was being pushed closed from blood flow.  That being said, Dr. Dove was now saying that they thought she had a congenital defect in her inner carotid artery that had caused it to be compressed.

This new diagnosis didn't change the prognosis or treatment but it did change the amount of possible testing they would do.  Now they would have to did deeper to see if there was an underlying disease or condition that would effect other parts of her vascular system. 














































































































































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Our new home in H8082

Bailey spent about 12 hours in the ICU before being transferred up to the Neuroscience (Stroke Ward). When Paul and I returned to the ICU on Saturday morning she was harassing the nurses, laughing and seemed to be well rested.  The nurse told us that the Dr. had been in earlier in the morning and Bailey had asked him what was wrong with her leg and her arm.  He explained to her that she had had a stroke.  The nurse said Bailey cried for a bit and then seemed to accept it.

They said she was doing really well and that the doctors had OK'd the move upstairs to the "stroke ward."  So, we packed her stuff - which was a surprisingly large amount considering we were only 3 days in - and rode the elevator to the 8th floor.  We would stay in this new home until they found her a room at Sister Kenny.

The Neuroscience Ward had a comfy bed/couch for me and a decent TV.  The staff was very attentive and pleasant.  I am pretty sure Bay was the youngest person on the ward.  Most of the folks were older than 40.  There wasn't any real medical testing planned while she was on the 8th floor so we really just hung out.  She was scheduled to start her therapies the next day but for now we got to just relax and enjoy being a family.

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.

Our first 24 hours at Minneapolis Children's Hospital

They loaded Bay into her second ambulance of the day and transported her to Minneapolis Children's Hospital.  She was brought in through the Emergency Room where they did their own exam while they tried to find an appropriate room for her.  Here we sat for about 2 hours.  Children's is a teaching hospital so we had med students, residents and attending physicians all take a peak and do an exam.  It was tedious and tiresome sitting there waiting but even worse to have to answer the same history questions for a dozen new people.  We were heartbroken and waiting for answers that didn't seem to come fast enough and meanwhile our daughter lay there almost unresponsive and paralyzed on her right side.  The doctors, nurses, and social worker who saw Bailey in the ER told us that they agreed with the Emergency Room staff at the Fairview Southdale Hospital - it was most likely a Conversion Disorder.

They finally found her a room at about 10:30 PM and moved us up to the floor.

On the med/surg floor she was surrounded by an array of toddlers and babies with varying degrees of medical problems.  I am quite sure she was the closest thing to an adult they had seen in a long time.  We met our doctor the next morning, he was a man named Justin Kirven.  He is an internal medicine physician that primarily sees patients in the hospital.  He said that he had reviewed the CT and had spoken to the staff that had spent time with Bailey in the Southdale ER, the Children's ER and overnight on the med/surg floor and was pretty positive that she had not had a stroke - besides the CT scan was clean so there was no reason to suspect a stroke.  He agreed with all of the previous opinions - Bailey had no "organic" medical issue - she had a Conversion Disorder.

Dr. Kirven said that the plan was to have a Psychologist and a Neurologist examine her before they made this the formal diagnosis.  They were supposed to come see her that afternoon (Thursday).  Well, that never happened.  We sat and sat and sat and waited and waited and waited and nothing happened.

We did have many visitors that day which made it a bit more bearable.  At least we weren't waiting alone.  The down side to all of the visitors is that they all want to hear the play-by-play from the beginning.  Once hearing the story they all have their own opinions of what the doctors should do and when.  While I don't mind hearing these opinions it is hard to listen when I am already frustrated with the doctors and feeling so helpless.  And on top of that none of the folks with the opinions have any real idea of how it feels to have a doctor tell you that your daughter, who you thought was really well adjusted, was so stressed out that it was making her paralyzed.  How do you really deal with that? All I could think is "how could I not know" and "what did we do wrong?"  It was heartbreaking and frustrating and very overwhelming.

We did have a nice surprise on Thursday evening.  A group of Bailey's friends came to visit and she LIT UP.  She sat up in her bed and started chatting them up like there was nothing wrong.  She had been talking most of the day but in a drowsy sort of confused way of a person who had just had a stroke.  Suddenly she was a clear as a bell!  She did have some aphasia so some of the words didn't quite come out right but she was trying.  She asked for paper and a pen and proceeded to write a thank you note to her friends WITH HER LEFT HAND!  It was so exciting.

Here was a girl who had no feeling in either her right leg or her right arm.  Her facial muscles in the right side of her face were drooping and yet she acted like nothing was wrong.  It was a true testament to the nature of our girl - stubborn, determined and very social.  So, while we had a bad day of waiting, we at least ended it on a positive note.

The "Event"

Note: All information in this post, prior to when I met Bailey at the hospital, is taken from witness accounts but as far as we know this is the sequence of events that led our girl to the hospital:

After school she went to the auditorium for call backs for the school play (Arsenic & Old Lace).  She did her tryout and went into the bathroom to put on her work shirt so she could go work her scheduled shift.  She was standing in the auditorium among friends putting on her name tag when she sat down.  She sat there holding her head for a minute and then tried to put her glasses on.  She missed her face with the glasses and slumped over into a laying down position.  Her friends were asking her what was wrong and trying to help her but she was unresponsive.  The school nurse was called and she called 911.

After they called the paramedics they called Paul (Bay's dad) to tell him to come to the school.  They then tried to call me - I was at school and unable to answer my phone.  When Paul arrived at the school he found Bay laying on the floor of the auditorium with the paramedics at here side.  She was barely audible and showing no signs of having an ability or desire to get up off the floor.

In the meantime I had realized that my phone was blowing up so I checked the messages and found out Bay was being taken to the hospital.  I called Paul and he updated me.  She was sort of answering yes or no questions but didn't seem to be able to get up or move.  I told them to get her loaded up and take her to Fairview Southdale.

I got to the hospital before the ambulance.  It was the most excruciatingly long 20 minutes of my entire life.  Once the ambulance arrived they made me wait another 15 minutes before I could go see her.  Her dad and I sat in the waiting room tapping our toes and plotting to sneak in the next time someone opened the locked door that led to our daughter.  Fortunately it didn't come to that!

Bailey's initial symptoms were those of someone who had had a severe stroke.  Drooping of the right side of her face, no feeling or movement in either her right leg or arm.  She would respond to questions that required a yes or no answer but that was about it and even these answers were unreliable.  She would change her response pretty much every time you asked the question.

The doctors did a CT and a CTA scan.  Both were negative. They ran blood tests looking for abnormalities and they were all negative.  They did a urinalysis looking for drugs and it too was negative.  There was just no explanation for these symptoms.  The Dr. explained that there is a thing called a Conversion Disorder that is a physical manifestation of stress that has symptoms that mimic a stroke.  When a person gets too stressed there body reacts and it is often stroke-like.  Since Fairview Southdale does not have a pediatrics ward they decided to transport her to Minneapolis Children's Hospital.  So, away we go.