Sunday, April 27, 2014

Going Along Fine......And Then

I try to keep up with this but  But life turns you to the subject at hand.

Saturday, April 19th

I enter the house.  My clothes stick to my body from my run.  I dart for the shower.  I am interrupted mid-dart however.   Where is Gary?  Why don't I hear him?  Where is his energy I usually feel?  It's not here.  I can't feel it.  I turn around and go back into the house to find him.  I find him.  He is sitting on the couch, next to the window.  He is just looking out the window.  Looking at nothing.  Just being still.   Feelings sink.   A baseball game later that day confirms I should start to get concerned.  He falls asleep in the car on the way to the game.  Unusual.  All's I can think is, "here we go".  Can't prove it, till it happens

Sunday, April 20th   Easter

We had a Easter Party this year.  I very involved Egg Hunt for the entire family.  It started at 2pm.  I was highly distracted because I was the host.  I hosted the game/hunt, and everything that came with it.  I had a conversation with my baby sister.  "Something isn't right.  I don't know what but something."   Having these conversations occasionally with her happily ended in nothing.  But not this time.  This time I even said it, "after the party wraps up, I am taking him to the hospital, have him  checked out.  I don't know."  You always seem to second guess yourself.  You always think, naw, not this time.   We gave him IBprofen after a brief screaming fit with his elbow hurting.   We also noticed he began to cough.  And cough.  And cough.  His older brother had come down with a  nasty head cold.  It looked like he had also picked it up.  The last cold virus he contracted caused joint pain.  Was that it?  Is that what I was seeing?  The Ibprofen worked like a charm.  Kept him comfortable for the Easter Celebration.  Clue number two, emotionally he was a wreck more than normal.  Off the charts behavior.  Like messing with Grandma.  Everyone knows not to mess with Grandma. He did.  Big Ut Oh.   At bed time I gave him Ibprofen again just to make sure.

Monday, April 21

I had not even opened my eyes yet and decided he would not be going to school because of all the coughing.  He joined me in bed.  I briefly cuddled with him, but decided to get up and take a shower.  Get my day started.  His brother and sisters were still in bed.   I was dressing when I heard one little moan.  "Ouchie", I heard coming from my bed.   My cell phone was in front of me.  I instantly called to leave a message on the nurse line.  I explained the sequence of events on the nurse line.   I asked for someone to call me back so we could talk about what the next step might be.  No more than twenty minutes had passed.  I started packing our suitcase.  I explained to Gary that we needed to go to the hospital.  His sense of urgency and discomfort was at a level of a broken bone at this point.  It came on very hard, and very fast.   I frantically packed everything I could.   I had the two other kids to check out but no time for that.  As we were heading out the door, the phone rang.  It was our nurse.  I believe we have had this conversation before.  Probably exact, word for word.  She advised I take him into the ER.  I replied, "we are already on our way.   No offense, we are not waiting.  We are at threat level midnight.  I repeat, Code Red people."   She stopped and said, "ok, we are expecting you!"   With a red carpet please.

The ride was horrible.   He screamed and screamed.  I could barely keep the car on the road with his plea's for me to help him.  He screamed his arm was broken.  "IT'S BROKEN!!!!" thru hot tears.  I was able to talk to him and talk him back to where I needed him to be so I could drive.  We were about to pass my husbands work exit.  I thought screw it.  I need help!   I desperately and quickly drove to the front door of his work.  Practically parked in the entrance where people walk in.  I knocked on the door and said, "I need him now."

Back on the freeway.  We did our best to make him comfortable.  Loud crying and completely agony. We finally reached Seattle.  Just past the Seattle Seahawks Quest Stadium, he passed out.  He went from yelling to instant snoring.  His lips were white, but it was so much better to see him get that instant of relief.  Don't worry, we made sure he was breathing!  He woke backup less than ten minutes later.  We finally arrived at the ER.  They wheeled him right back.  We were able to talk him into numbing his port in the car.  Lord knows how we did, but I was glad we did.  That meant as soon as they were done assessing what was going on, they could hook him up to pain medication and get him comfortable.

I already knew what he needed.  I knew we would be admitted.  He needed tordal and antibiotics.  Just like last time.  In September of 2012, this happened on the other side before.   It was a little hard getting through the typical student and ER docs, but my ANGEL of a rheumatologist showed up and helped me out.  I told her my feelings were if they sent us back out of there with a dose of IV Tordal we would just bounce right back in.  I told her this is an infection.   Dad was not on the same page as I.  So there was a brief disagreement between us, in front of the doctor (lower my head, blush).  Communicating your maternal instinct can be difficult.  I just know doesn't always cut it for anyone, even the father.    I accidentally said shut your pie hole.  I would like to say it was unprofessional of me but mothers are not professional, they are way beyond that.  It was just fine later on.  Forty-five minutes to be exact.   A fever.   A fever of 101.5.    We were already being admitted before the fever set in.  Because my rheumatologist rocks.  A total rock start.  She was just hired officially on staff at SCH.  She is amazing.   The words are off the page with how great she is.....I wish she came with experience but what she doesn't have in that, she makes up for in listening.  Good hire SCH.

After we got over our little tiff (me and Dad) they ordered a ultrasound to see if they could see an pocket of infection.  We wanted to fight it because it meant them applying pressure on the elbow.  But I also agreed with there argument.  One was going to be ordered anyway, and getting into one on the floor as an in patient is time consuming.  

We were put in isolation because of the head cold.  He was so sick in the room.  :(   Every 4 to 5 hours the fever would break back through the tylenol.  A wide spectrum antibiotic was ran.  Covering our bases.  We ran labs.  Kept him comfortable.

As soon as the tordal would wear off we knew it.  He would ask for his elbow to be wrapped.  We had an opportunity to meet new rheumatologist on staff.  That was a good opportunity.  I was asked a lot about the behavior of the other calcium deposits.   This is what this was.  A calcium deposit had become infected inside his elbow.

April 21-22

We ran the antibiotics through his port along with the pain medication.  By Wednesday they wanted to get us out of there.  Rounds were at 900 that day.  Before examining him, I stood in the hall with a group of people discussing what was next.  They wanted to send us home on oral antibiotics and oral Ibprofen.  We had switched over to it already on Tuesday.  I told them point blank, I wasn't feeling confident.  I told them however, I knew where they were if it didn't go well at home.  I said my maternal instincts wasn't feeling great, but ok.   Orders were in to go home.  They went in one last time to have a look for themselves as they were basing this off the interns observations.  She was ready to kick us out.   Until the head doctor examined him.   He said he expected him to be using the elbow more, and not still be protecting it so much.  That concerned him.   Yes, it concerned me too.  I mean I wanted to go home, but not with a child that was not healthy.   He ordered a MRI.   Oh the dreaded MRI.   We did not want have to do with general anesthesia.  We had tried in the past to do it without.  At the time, he didn't even make it to the DOOR of the MRI machine.   So we tried a little benadryl.  He went NPO right then and there.  Nothing to eat or drink in case they needed to fully put him under.  That was my order.  I knew our chances weren't great.  Sure enough.  It didn't work.  They wanted him to straighten the arm and hold still for 20 minutes.  We walked away defeated but what could you do.  We were hoping to get it done, see nothing, then go home?  But I already knew that was not what they were going to find anyway.  So we went back to our room to what to hear what was the next step.  Was it important enough to put him fully under and when could we get back in on the schedule for MRI.  Especially after hours.  Our nurse (WHO WERE ALL ROCKSTARS) said it would not be till the next day at this point.  I asked them how are we going to keep him NPO that long : (  ........  She said she would call and find out.   She came back in the room with big eyes.  She said, "are you ready for this? Your heading back down in 45 minutes!".  I thought it was because we are VIP but it turns out, we have really great doctors who don't stop.

Down in the pre-anthesia they explained they were going to try this without full general.  And just heavy sedation.   It worked!!!  They got him asleep with heavy drugs.  No breathing tube.  He was returned to me after midnight.  It was a nerve wracking 7:30 to midnight.  I was so completely exhausted I thought they sedated him too much and were just to afraid to come and tell me :(  I didn't cry though.   He was loopy.  He was saying things like, "Tell that doctor Thank YOU.  I mean, tell him THANK YOU."   Then he happened to......toot.   Real loud.  He said, "tell him that too."   I was like, "oh my son, I will not."   He then put down a giant sandwich at 2am in the morning.  I swear it was like visiting my young adult years.  Having a great time with my buddy, eating at 2am.  
The MRI revealed an abcess

I mean we knew that already but the question was how big and where and what to do about it.  After three days of antibiotics, they weren't certain antibiotics would be able to penetrate this.  A surgery consult was called in right away.  They instantly came to the room.  We were very familiar with the surgeon.  He had just removed a calcium deposit/molluscum off of Gary on April 1.  (That surgery went well and this infection was not related to that surgery).    He examined the elbow and said no.  He said he didn't want to touch.  He order strong IV antibiotics and hot compresses.  I disagreed.  There was something different about this.  It wasn't acting like it was going to come out.  Although there was a spot of calcium on the center of his elbow, it looked tricky.  It looked like that was the infection.  But sure enough it was not.  We did what he asked.  Packed it in heat and upped the antibiotics.  Rheumatology was not satisfied with this.  I agreed.  You could clearly see on the MRI that the infection is walled off.  Our doctors were able to get a compromise in.  They compromised having radiology go in with an ultra sound guided needle and drain.  Easy peasy.  No food after 2am, they took him down at 8am the next morning.  They put him to sleep and found 2 abscesses.  

I will spare you the debate and the conversation between the surgeon and I.  After the wheeled him off I was a little mad about the indirect comment of "I talked to a lot of people of this", AS they are wheeling him back.  Do your job, and shut it.  And there it is.  My temper.  I honestly got back to our room and nearly broke down.  I am Mom.  Just a Mom.  No I don't have  a license for it but God downloaded an instruction manual in my head, so TAKE THAT.  I was able to text my sister and calm down.  But I felt emotionally beat up.  

After the procedure they kept us one more night for observation and IV antibiotics.  He will continue to be on antibiotics for 2 weeks to help with continued healing.  

I can hardly believe we have to get back to business as usual tomorrow.  I am not ready yet.  I want everyone to stay home.  But, doesn't work that way.

Special thanks to my family for your support.   Helping with brother and sister.  Thank you for checking in on us.  Thank you to the Saas Family for visiting.  I had the most wonderful time with my niece.  It made that afternoon much more bare able.   I am so lucky.

The good news is although his JDM labs were a little bit out of whack, his JDM doesnt seem to be flaring.  We got IVIG in the hospital with a small dose of steroids to keep on schedule.