Pediatric Stroke: Michele's Story

The first day

Before today I had a very healthy 11-year-old daughter. She was an accomplished artist, played the violin, jumped on the trampoline, ran around with her friends and did volunteer work with the Girl Scouts. She was so healthy, so normal.

That was until 3 p.m. today, Easter Sunday, April 11, 2004. A day I will never forget nor be able to say without crying.

It was Easter Sunday. My sons, who are older, are not overly excited about the day, but my daughter Michele is very excited to see her Easter basket and all the goodies it contains. She asks if she can have chocolate and I let her — knowing it is a special day. Soon we all get ready and leave for 10 a.m. mass at church.

As soon as we arrive at church Michele asks to use the bathroom. I tell her to hurry so we can find a seat. When she comes out we go and find our seats.

About half way through mass she says again she has to use the bathroom. I tell her to go and then think to myself, “oh no, she has another bladder infection.” Great, now I have to make another appointment for her with the doctor. This is the third time this year. I do not understand why she keeps getting them and she is only 11.

Once mass was over she again asks to use the bathroom. “OK, I definitely have to make another appointment.”

Beginning symptoms

When we get home, she goes to her Easter basket for more chocolate and to play with her little things that are included in it. She asks me to sit down and watch a movie with her, which I do. Once the movie is over I tell her it is time to get ready to go to dinner at her Uncle Eddie’s house. It is almost 3 p.m. I ask her to go upstairs and change out of her dress but to still wear something nice.

When she comes down a few minutes later she tells me her head hurt and her arm feels funny. All I can think is, “I do not have time for this.” I tell her to finish getting ready. When she is ready she again tells me that her head feels funny and she does not feel good.

I tell her, “fine, then go lay down on the couch.” I tell my husband Frank, to go without us and I will let her lie down for an hour and see if she is feeling any better.

I turn to Michele and I see she is just wandering around the room. I tell her, “If you do not feel well then you should be lying down on the couch.”

Frank goes over to her and tells her to lie down on the couch.

More than acting out

She finally goes over there and sits down. He sits next to her and asks her how she feels. She just stares blankly at him. I tell her to answer her father but she just keeps staring. He says something is not right and maybe we should take her to the hospital. I say, “She is just fine and is acting like a spoiled 11 year old.”  

He says, “No, we are taking her to the hospital, call an ambulance.” 

I’m not calling an ambulance when she won’t even talk to us. I tell him we can take her ourselves. I ask the boys to take the food we made over to their uncle’s and we will meet them all there later.

Then Frank asks Michele to stand up because we are taking her to the hospital. At this point she stands up but immediately falls to the ground.

He says, “Call an ambulance.”

OK, maybe something really is wrong with her, but I still think it has something to do with the bladder infection.

I call 911 and tell them that I need an ambulance. When they ask me what is wrong I do not know what to tell them. So I say, something is wrong with my daughter, she will not talk to us. She just stares, and she cannot stand up.

They ask me more questions. They tell me to look at her, “Does she look OK?” 

So I take a good look at her and then I lose it. “No,” I tell them unable to stop myself from crying. “Something is weird, she is just staring blankly and she is drooling. Something is wrong.”

Getting help

The ambulance arrives in less than 5 minutes; they get there even before the police. When the attendant takes her blood pressure it is 140 over 90. He tells me, “Whatever it is, she is not faking it.”

They put her on the stretcher. At this time she seems more alert. She starts talking to us but nothing she is saying makes any sense; they are not even real words. Somehow the attendant understands that she wants her glasses. 

We leave for the hospital around 3:25 p.m.. After we get in the ambulance the police arrive but we are already prepared to go. The ambulance attendant is talking with someone. I find out later that he is asking for the MICU (Mobile Intensive Care Unit).

So when we leave our home I was surprised that we turned in the other direction — away from the hospital. We meet up with MICU and they came into our ambulance. They hooked Michele up to IVs. They were talking to her and she was able to respond back to them in her normal voice. The attendant tells me we are now just as good as an emergency room. We then continue to the hospital.

Testing at the hospital

Once we arrive at the hospital, they immediately give her a CT scan. The person performing the scan shows us the report. He shows us a black area; he is not sure what is was and thinks maybe she moved during the procedure.

We return to the emergency department where many people come in and out of the room. Michele, who had fallen asleep during the CT scan, is now awake. She is talking. She was talking to everyone and seemed to be doing very well, acting like a normal 11 year old. She is bored. She keeps asking to go home.

I tell her that something happened and they need to observe her at least overnight. They bring in a TV and some videos for her to watch. I put one on for her but she falls asleep again.

The doctor comes in and tells us they are going to transfer her and a special medical team was coming over to pick her up. The special team arrives around 7 p.m. and eventually this person comes in, along with a team of people, and asks me questions. I assume she is just another ambulance attendant. I did not know it at the time but I find out later that she is a neurologist, Dr. Venkat.

She asks Michele questions but again Michele is unable to talk. Dr. Venkat asks Michele to smile. I tell them to say “cake” or “soup”. These are words that she and her girlfriend say all the time and there is some hidden joke and it always makes her laugh. They do this and, sure enough, she laughs.

When we move her to their ambulance bed we see that she has wet the bed. They are very nice about it and we change her clothes and put on a hospital gown before we leave. I am still thinking that maybe this has something to do with her bladder and that is why she lost control of it and wet the bed.

Intensive care and further testing

When we get outside to the ambulance I am very surprised. It is HUGE. Just slightly smaller than a tractor trailer. They all get in back with Michele. I sit up front with the driver. It is very scary being in the front seat of an ambulance and traveling that fast on all the roads.

By this time I am a nervous wreck and crying, worried that no one seems to know what was going on. At least being scared of the driving takes my mind off of being scared of what was going on with my daughter.

We arrive at The Children's Hospital of Philadelphia and I again compose myself for my daughter’s sake. I smile as they take her out of the ambulance and up in the elevator. They immediately bring us to a room in the Pediatric Intensive Care Unit (PICU).

After a few more questions they bring her down for an MRI. When we get there the person who is there to administer the test is not very nice to us. He is barking orders. I try to think why this is and realize that this is Easter; he was probably celebrating with his family and we called him in to do this test and he is not happy about it at all.

We take off all metals, jewelry, glasses, phones, etc. As they are putting on the machine I talk to her and tell her to think of silly thoughts. I tell her to remember what we had done the day before, the games we played. I was trying to give her happy thoughts so she will not be scared by the big noisy machine.

I stay with Michele while she is being tested. I keep my hand on her foot so she will know I am there.

Once the test is done the technician comes out and is suddenly very nice. Wow, I thought, what a change in personality. When they move her off the MRI machine we notice that she has wet the bed again. I thought, “Great, he is going to yell at her now.” But he was very sympathetic. I was wondering what brought about the change of heart. I was soon to find out.

Learning test results

It is about 8:30 p.m. when we get back up to the room. Many members of our family are here now in the kitchen area waiting to find out what is going on. Frank goes over to talk to them but I do not want to leave Michele’s side. Family comes in and out of the room.

Finally Dr. Venkat comes back to the room with the results. I ask someone to go get my sons; they are old enough to hear what is going on and I do not want to have to repeat it. We are finally all gathered together.

The MRI determined that my daughter had a stroke. I could not believe it; my 11-year-old daughter had a stroke.

I say it to myself again: my 11-year-old daughter had a stroke. That can’t be. That only happens to very old people, sedentary people, and overweight people. My daughter was none of those things. She is young, strong, vibrant, very active and not a pound of fat on her body. What happened?

I am inconsolable. My sons are crying, my husband is crying and I can do nothing for them. Other family members were in the waiting room. When my husband calmed down he went to the waiting room with my boys to let everyone know what was going on.

Thank God our families were there. They took care of my sons and were able to console them and each other when I could not. I could not bring myself to leave my daughter’s side.

Off to surgery

The doctors wanted to do an angioplasty. They were not sure what caused the stroke but the test would help them determine the severity and what next steps to take; unfortunately it could also kill my daughter. They wanted to know if we wanted this test performed.

I could not believe they were asking me to make this life and death decision. I’m only a mom, I have no medical knowledge. How am I supposed to make these decisions? Sure, I can take care of a scraped knee but this is way above my scope of knowledge. How am I supposed to make these decisions?

So I ask them what they would do if this was their daughter, and with that information we, of course, go with what the doctor recommends. I will use this as a way of making many of the decisions in regards to her care over the next few months. 

At midnight they take my daughter away. Again I cry uncontrollably.

We tell the family they might as well go home as there is no more they can do. Michele will be in surgery for two hours and then in recovery.

Ongoing monitoring 

Thankfully she came back from surgery only an hour later and while everything went well; we were told the angioplasty did not show them anything new.

Michele is sleeping now. She is hooked up to different machines to monitor her heart, blood pressure and pulse. They have the pulse hooked up to her left arm and every time she bends her arm the monitor goes off. The nurse comes in and fixes it, but less than 10 minutes later it goes off again. This is driving Frank and me crazy. Eventually, Frank and I figure out that she needs to keep her arm straight so it does not go off. Not an easy task since this is the only arm she can use.

Frank eventually falls asleep next to her bed. I fall asleep on the “bed” in her room which doubles as a window seat during the day. Our nightmare has begun.

Long-term concerns

One of my concerns when this first happened was with Michele’s drawing. Before her stroke it was not unusual for her to draw five, six, even eight hours a day. She loved drawing and she especially loved drawing Anime characters the most.

She had such a passion for it and was pretty good for an 11-year-old. Then, when she was lying in her hospital bed the day of her stroke, it suddenly dawns on me, what if she cannot draw again? I started crying again. I cried for many reasons but this one thought that kept going through my head. I was so afraid that she would lose her ability to draw. What if she sill had the passion but would never be able to take pencil to paper again?

When she was home from the hospital for about a month — and about four months after her stroke — she was just learning to write again. It was a struggle for her to write with her left hand and she was not doing very well.

At this point I still did not realize the extent of her stroke. I did not realize that she lost all ability to write. That writing anything for her was the same as when a 2-year-old first puts a crayon in their hand. I should have started her on circles and lines, like you would with any young child learning to write for the first time.

I thought she was simply putting the pencil from right hand to left hand, while not easy, was not really all that hard. But this was not the case.

So unknowingly, I watched as she struggled to write each of the letters. I was saddened as I thought, “If she can not write simple letters how is she ever going to be able to draw?”

Not knowing the extent I finally made the decision that I would ask her to draw something.

Draw something

So one day I sat her at the kitchen table and asked her to draw me something, anything. She said, “I can’t.”

I told her you do not know that until you try; just try to draw something. She just sat there and stared at me with such hate in her eyes. The minutes passed and she just sat there. I told her to draw anything, “draw a person, draw a house, anything.”

She just sat there getting more upset. Silent tears ran down her check.

Finally she was angry enough that she just wanted to end it so she drew a house and then went up to her room and slammed the door.

I was happy that she drew something, but at the same time I was so upset. Did I do the right thing or did I push her too hard? Should I have waited? I cried as I stood there holding her little drawing wondering if I should have left her alone. I just wish someone would come and give me all the right answers.

Trying again

As afraid as I was the next day I sat her down again and asked her to draw something. I was so afraid I was pushing her but at the same time I was afraid I was not pushing her enough. I waited for her to glare at me but, to my surprise, she quickly took the pen and paper and drew a wolf. She gave it to me and then went back to watching TV.

I cried again but this time they were tears of happiness. She did it. She drew a picture. That was just the beginning.

From that day on she continued to draw little pictures. Eventually the picture became more detailed and larger and finally, within a few months, she was back to drawing as well as she had before the stroke, but now with her left hand.

Today her drawings are remarkable and she again draws for many hours each day. I am so thankful that I have made the right decision. I just wish all the other decisions I have made for her will come out so well.

Originally posted: February 2011