Wednesday, June 12, 2013

Perspective

So summer is almost here, really, just around the corner.  The littles will be done camp (school has been over for two weeks) Friday.  On that same day, Maggie and I fly to Orlando for a quick weekend trip to Disney World, and next Wednesday Beaumont is out.  Yes, summer is just about here.  YAY!

So, I look back and see it has been a while since my last update.  Nothing new there.  Except, a lot has happened in these last few months.  As a matter of fact, right after my last update in February, crazy things happened.   I can say though, that finally, things are getting back to normal.  Almost too normal if you ask me.

The last week of February Maggie got a sore throat.  She stayed home a day or two one week, but went back to school the following Monday.  She was fine again.  Then on Wednesday she started feeling sick again.  We were supposed to go away to the Smith's Pocono house with them and the Cioccas that weekend.  I was debating whether she could go or not.  She was pretty sick Wednesday and Thursday, but seemed to perk up Friday.  We did not go.  Thank goodness.  I took her to the Doctor on Saturday AM, as she was so lethargic and just generally miserable.  They checked her out, then sent us to the lab for some tests.  I had to carry her in to the DR's and around the hospital for lab work, as she was too weak to walk.  Sunday AM, she was still not moving, I mean really not moving, to the point where I put a pull up on her, because she literally could not walk to the bathroom.  She had not eaten in days.  She could not sit up, walk, barely even talk.  We took her to the ER.

They pumped her with a bag of fluids and said she had a virus, basically dismissed her (and me) and sent us home.  When we checked in they took her blood pressure.  It was 139/85.  I asked if it was high.  The check in lady said she was moving, not to worry about it.  (note: she was NOT moving.  In fact she was straddling my lap with her head on my shoulder, she was so weak).

Sean or I had been sleeping with her for days.  On Sunday night I slept on the couch with her.  She groaned and gritted her teeth all night.  She complained of a belly ache.  I rubbed her belly all night, but did not know what else to do.  On Monday morning I sent the other girls off to school.  Sean took them.  Kerri was home with me.  Maggie was saying her bum hurt.  I assumed she was constipated (she had not been to the bathroom in days).  She swore she did not have to go to the bathroom, but I insisted.   I put her in the tub upstairs.  I came down and got miralax.  When I came up, she was crying in pain.  I got her out and laid her on the floor.  I was giving her the miralax, and she started throwing up.  I quickly picked her up and put her in front of the toilet to throw up.  Her whole body was tensed up to the left side.  Her eyes were stuck looking up to the left side.  I was yelling at her to throw up in the toilet.  Not because I cared about the throw up, but because I wanted her to turn her head, just turn her head and show she could.  She could not.  She could also not stand up.  Her legs were in an awkward position and had absolutely no strength in them.  I carried her downstairs and called Sean, he had just left minutes ago to drop off girls at school.  I told him I think I needed to call ambulance, as he had just seen her, he said, I'll turn around, I'll be there in ten minutes.  But at the same time I was yelling at Maggie to say something, anything.  She could not.  I asked her if she heard me.  With her body in a crazy awkward position, with me holding her up, and her eyes stuck in her head looking up to the left, she just barely nodded her head yes.  I asked if she was in pain.  She nodded no.  I asked if she was scared, she nodded no.  Well, I sure was.  I hung up with Sean and dialed 911.

The police arrived first.  As Maggie was naked from the bath, I asked Kerri to get me clothes and underwear for her.  Kerri did.  I laid Maggie on the couch and was putting my finger in the air trying to get her to follow my fingers.  She could not.  She was still stuck in that position.  The police man was asking questions.  The ambulance arrived.  Sean followed them in.  They asked lots of questions.  I answered.  I called many numbers.  Jenn Smith answered and came and got Kerri.  It was truly amazing, she just took her out of Sean's hands and took her, no questions asked, just helping us out.  When we got in the ambulance, the EMT asked me if we were at Bryn Mawr the day before.  I said yes.  He asked, did I want to go there again.  I said, should I?  he just looked at me.  I said, should I go to CHOP.  He said, I think that is a great idea.  Let's go to CHOP.  I knew that if he thought we should go to CHOP, it was bad, real bad.

On the way there, I called friends, to get coverage for my other daughters.  Sue called, and asked how Mags was (she had been concerned all week).  Apparently ( I don't remember) I said, we are in the ambulance.  She said what's wrong, and all I said was, she is not responding. Call Sean.  and I hung up.  Sean did not really know what was going on, as he came in on the tail end of things.  Sue sent out an email to her friends for prayers.

The ambulance ride was hard.  I felt so helpless.  I wanted so badly to be doing something, but there was nothing I could do.  The EMT was great.  He kept saying it was probably some crazy virus and she just needed some fluids.  She had another seizure on the way to the hospital.  It was horrible to watch.  When we arrived, the staff quickly went into action.  They treated her for spinal meningitis.  The gave her high doses of antibiotics for various infections.   Which she then had a reaction to.  We now know she has Redman's syndrome.  Which is a reaction to a large dose of vancomicin.  We were then shuffled into a room for a CAT scan.  I just remember holding Sean's hand and saying over and over again, please God, don't let it be a brain tumor, please, don't let her die.  It was honestly the scariest 2 minutes of my life.  When the initial results were read, they said it looked okay.  They were now focusing on a virus or meningitis.  But then the radiologist read the report.  He thought it looked like she had suffered a stroke.  At that moment stroke protocol went into practice.  For some reason, this scared me to death.

I remember calling Catherine.  Asking for names of neurologists.  I remember calling my dad.  Asking if he was busy this afternoon.  If not, would he mind coming over to watch the girls.  He said sure, why?  I said we were in the ER with Maggie.  He asked what they were saying.  When I tried to tell him about the stroke, I lost it.  I could not speak.  I quickly pulled myself together and told him.  I just could not believe my little girl was going through all this.

to be continued...