Saturday, October 25, 2014

We Gave It A Try......

Sodium Thiosulfate we started on July, second week?  Three times a week.  It was a rough start.  It caused him to have a stomach ache, almost instantly.  It caused vomiting and headaches.  But we soon got it all worked out with medicines to combat those side effects.  Zofran, tylenol, benadryl.  As a review we were in the hospital in August, then again in September for infections of calcium deposits.   Methotrexate was pulled, Imuran lowered.  In October he started to become intolerant of the sodium it seemed.  So we cut down to two infusions a week.   We also stopped seeing improvements or movement of the calcium.  After three maybe four weeks of being off methotrexate, a rash on his face appeared.  I thought it had started almost as soon as we stopped methotrexate but it may have started at the same time.  The rash was not typical JDM.   Although it did cover his eyelids.  It was like a chemical burn or something.  Benadryl helped.  We even stopped in at the dermatologist to ask if this is a JDM rash or a drug reaction from the sodium thiosulfate, what are we looking at here?  JDM labs have been steady.  Strength is pretty good.  Stamina could be better but its winter, its color there.  Nail capillaries are fair to pretty good.  So as far as dermatology was concerned,  they just didn't know.   The very next day we had a rheumatology appointment.   This was a big day.  The rash made a GRAND appearance for everyone.   So much so that he looked like a little red swollen tomato with a tiny nose!  Everyone that came in to say hello would get to the second syllable in his name and their jaw dropped open.  The doctors came in.  They had already been tipped off by nurses.  I love our rheumatologists.  They had their game faces on.   We quickly pulled the obvious, sodium thiosulfate.  No more, we stopped improving anyway so.  Then we discussed what to add back in.  Step two was to up steroids to combat the inflammation.  Only a tiny bit though.  Because a few months ago they came to me to say, we want him off steroids.  Then we decided to add back in the methotrexate.    When we pulled that without weaning, I knew it was a JDM rule violation.  YOU DONT REMOVE, you step away slowly, and see what the immune system will do.  At the time however, we were fighting constant infections.  Our fear is one of the times, it was doing to do more damage then we could control.  Infections are dangerous.  They kill people.  So based off that we felt it was necessary to violate that rule.   We also added more Imuran.  Imuran gets my vote.  I don't know why.

That evening after our drive home, I want to say that I just accepted the way things are.  The way the ended up.  But no.  I began to obsess over it a bit.  Nothing unhealthy mind you but, it was like running around an art sculpture.  Looking at it over and over and over again.  Trying to figure out what it is.  Trying to figure what is going on.  My instinct was telling me that it was not JDM.  That this was not his dermatomyositis flaring.   It was what I did in the beginning.  Maybe he has allergies.  Allergies to what, well himself we have established.  But even the doctor asked have you switched laundry detergents?  Anything new?  I want to be insulted by that but I was right with them.  Let this be something else.  Not his dermatomyositits.  There was just no definitive answer.  I walked out of that appointment feeling like we had too.  We have to treat this like a flare because it would be bad not too.  Even if its not.  That night at three am my eyes flew open.  He is at his worst when he just home from school.  Why.   This started back in September, when school did.  What is it at school that is making him do this.  Sunblock.  I bet he is having an allergic reaction to the sunblock.   For a whole week we kept it off his face.  I even held the methotrexate hoping by taking away the sunblock things would magically return to normal.

It does appear to be a  reaction to the sodium thiosulfate. :(

Saturday, September 13, 2014

The Bad, The Good, The We Shall See

Last time I updated my sweet baby boys blog.....can't remember.  I think I was getting tired of nutritional advice or something.  Still on the fence, but getting there maybe.

Recently we just got out of the hospital.  The catch up for anyone who reads this but not sure if anyone does and that is A ok, is we started a new medicine.  This new medicine is called sodium thiosulfate.  It is for the calcium deposits.  This is where the good and the bad come into play.

The Good
The good is Gary's dermatomyositis seems to be.......shhhhh.....quiet.  Dare I say it.  Nail fold capillaries look good.  Muscle strength is good.  Rash and skin are just fine.  Labs,  good.  They are holding to near normal.

So with Gary's dermatomyositis seeming to be under control we have proceeded.  We have proceeded on to trying to get rid of the calcium deposits dermatomyositis left behind.

In April we landed in the hospital for a week with a infected calcium deposit.  At that time we had the opportunity to do a X-ray survey.  That means they took pictures of his entire body to survey just how much calcium he has and where.  We talked about the next step.  Because now we are dealing with a new problem.  The problem is his dermatomyositis is clinically off.  (In my opinion).  Now his body is left dealing with these deposits it has left behind.  What is it going to do?  It is going to get frequent infections. Like a sliver in your finger or on the bottom of foot.   It is going to put puss and infection around that sliver to push and purge it out of your body.   You can quickly realize why that becomes sort of a problem and no fun at all for a seven year old.  These big chunks of calcium, all over his body, that are not suppose to be there.  Infect them out.

It has however been explained to me that since we started this new medicine which is in theory suppose to dissolve the calcium, it has created the opportunity for germs to be introduced.   Because calcium dissolving wants to come it does.  Through a hole in the skin that it makes.  An open wound that drains calcium.  Not cute or pretty but nothing from my son is gross or yucky.  Text book yes. Yes, not in my world!  Never will I ever say, "eewww gross".   EVER.  I will never make my child feel like that.  Ashamed or embarrassed over something he has absolutely no control over.  Over something that chose him.    I am getting off track.  So the opportunity for germs like staph to enter are numerous at this points.  Because the good, is sodium thiosulfate doing what it is suppose to?   The bad, immune suppression and frequent infections make for a bad recipe.

We were back in the hospital of May (Memorial Day Weekend) for a fever that would not go away.  It made us nervous but in the end, after almost 2 weeks of fever, it finally stopped.  That was a difficult weekend.

It took months and months but after the April elbow infection, we all agreed to give sodium thiosulfate a try.  Amazing work by his doctors.  I am so grateful for their dedication and determination they put into my son.  I am not always happy but 95 percent of the time,  I will sing their praises!!!

Sodium Thiosulfate
They had never given it to a child at Seattle Childrens Hospital before.  We were the first.  Yes, it was a little scary but with Gary's JDM ok, I felt confident.  I want these deposits gone!!!!!  They are disfiguring.  They draw attention from children and adults alike.  Some cause discomfort.  Some don't.  But it is in my opinion that they can't just stay there.  If it were my body, I would want me to do something to help.  If there was a remote possibility of them magically going away.  Then give it to me!!  The sodium thiosulfate has been given to a few other patients.  They all report it helped.  The first infusion was rough.  It made him throw up.  The second again two.  It took us a few weeks to get him so he felt alright.   Zofran first, tylenol and benedryl by mouth next.  Then the hour infusion of sodium thiosulfate.  Three days a week has been rough.  It kind of kicked our summer out the window by what is one summer?  We are talking about a lifetime here.  A lifetime being free of the disease and its effects.  So its worth a shot.

9 weeks In
About 5 weeks in actually, calcium started coming out from his arms, legs, and hips.  Not a lot but never before has it done this.  We were constantly walking around with bandaids, bandages, pads, gauze.  Because without warning, calcium would some flowing out.  As it exits,  it also creates the entrance.  And that is what landed us in the hospital this week.

Last Friday he started to complain about his elbow hurting.  I thought, "ut oh".  I nursed it through the weekend.  I gave him ibuprofen and did hot compresses.   This is not the first time this has happened. In August he had an infection is his leg on or around a calcium deposit.  It left an actual hole in his leg.  We have seen these before but it still freaks me out.  I mean, as a mother, my mind goes to these places, like, "oh gawd, is his leg going to rot off".  Well, Im not going to stand by and watch that happen!!!!!  Geez.  Exhausting I tell you.  Anyway, a quick ER visit and antibiotics fixed that up.  No swimming or baths for the rest of the summer but it healed.  Back to the elbow.....the elbow was tricky.  Ouch, ouch, ouch but not CRAZY ouch.  So Monday during our infusion I had them come take a look.  I was upset because he had just gotten off antibiotics from his leg.  How could an infection return so soon to any part of his body.  Well, it could and it did.   On Monday they gave him some intravenous pain killer and antibiotic.  They said if it gets worse before Wednesday infusion, call us.  I was happy with that. Until Monday at 1:30 am he spiked a fever of 102.   Another UT OH.  I gave him naproxen and benedryl and decided to let him sleep the rest of the night.  Call the doctors in the morning. I normally would have gone right to the ER.  But with the antibiotic on board I thought it will be fine till morning.  I called right at 8am.  I didn't sleep a wink the whole night.  I cleaned the bathroom,  scrubbed my shower out, and fretted.  He slept all the way to 11am.  At 8:30 they said if the fever returns, come to the emergency room.  I checked at 10am.  He stayed asleep.  98.6.  I was feeling pretty good.  But at 11am, he woke up and began to shiver.   So I started packing.

On the way to the hospital, he was alright.  I stopped to get him a gatorage and a treat.  I told him to drink because they could potentially put him on NPO.  So he drank and ate a little chocolate.  We were five minutes away from the ER and he vomited.  All over my car.

In the ER they were a tad frantic about things but I remained calm.  Three patients came into ER at the same time.  Gary being one of them.  They assess who needs to be seen first.  Gary was covered in vomit, pale and red at the same time, and shaking uncontrollably.  They pointed us and told the other patients to have a seat first.  We were immediately taken back.  They could not get a temperature read on him (meaning his temperature was normal).  But you could clearly see something wasn't right.

All of his deposits were inflamed and huge.  They pushed a little morphin because he was complaining his legs and arms hurt.  They also dumped saline into him fast.  He quickly started feeling better.  Antibiotics were ran right there in the ER.  I already knew we were going to be admitted and stay for a few days.    In the next few days our hospital room was like a sandwich shop at lunch time.  So. Many. People.  Key people however was rheumatology.  We all agreed we needed to try and put a stop to these infections.  So, with JDM being hush hush in his body right now, SHHHHHH, I don't want his freakin immune system to hear this, we are stopping some immune suppression.  (My car once broke down on my because it saw me eyeing a new model of it at a car dealer ship.  Im superstisious so don't say anything).  After five years of methotrexate.  We are no longer on it.  At first they wanted to stop immuran.  I didn't agree.  I say improvement with Immuran. I have not seen anything out of methotrexate.  I would rather give that the cut then one that has kind of proved itself.  He has had other infections in the past and immuran had nothing to do with it.  But methotrexate has.  It has been there since May of 2009.  They convinced me to go down on immuran.  I said ok.  Plug your nose, jump in the cold water with me?  We were sent home on antibiotics after Gary completed an MRI awake.  Loopy but awake.  It confirmed cellulitis in his elbow.  We believe it is what made him sick.

There is no case like the other.  We can compare.  I like that.  But all children get handed a level of severity of this disease.  You cannot take a child who has a mild case of juvenile dermatomyositis, who quickly goes into remission, to another child who rolls in and out of remission, to another child who never see's it.  It matters not what doctor you have.  If you believe that then...........

Sunday, July 20, 2014

Disease Giver

I am the great disease giver.

I give you dermatomyositis.  You are suddenly having trouble getting up the stairs.  A strange red hot rash is on your face.   You have an unexplained sore under your arm.  You don't recall hurting yourself.     You feel overall tired.  You thought it was hard eating a sandwich the other day.  You had to work to swallow it?    Now, eat your way out of it.  Avoid certain foods.  Intake of others that will make you feel better.  Happy healing!!!

Thursday, June 5, 2014

Another Trip Up

A few weeks ago, on a Thursday, Gary woke up and did not want to go to school.

This is not out of the ordinary.  He does not enjoy school.  Everyday the words, "I don't want to go to school."  He will often follow it with every excuse why not.  Including difficult ones for his mother to decipher like, "I'm so tired."  I have to make decisions on whether to push him to go, or ease back and let him rest.

This particular morning he planted himself on the couch during breakfast.  I tried to lite his fire to get him moving but he just layer there starring.   I finally gave in and said, "Ok, lets take your temperature."  As the thermometer beeped, I looked at him and said, "Guess what, you do get to stay home.  You are funning a low grade temperate."    He didn't celebrate.  Normally he would declare success but not this time.

I called the doctors right away.  On Tuesday they had seen Gary in clinic.  He complained a bit of ear pain.  At the time they didn't see anything but along with a running nose, it could have been the start of an ear infection.  They called in a prescription for antibiotics.  It was delayed because it was called in to the wrong place.  So 24 hours later, he was finally able to start it.  He started running higher temps, and was getting severe chills.  (Children or even adults that have ports in, this is a sign of infection, so I have been told).  After being on the antibiotics for less than a day he began vomiting.
I called the doctor on call and said, "how could a cold turn into vomiting?"   I was getting really nervous at this point.   He said it very well could be a virus and there wasn't much they could do for him.   I hung up a little miffed but.....hey I get it.  I have a child with a disease who can get sick like regular kids too.  Its not fair but, shrug, what can you do?  OH I know what I can him to the ER.   Sorry, I am not going to just sit around watching my kid vomit with high fevers,  day 5 now of no eating.  So the next morning we took him to the ER.  I couldn't just wait and see if this was a virus.  Honestly, I just wanted them to check him out,  make sure all was ok, and that he in fact was just sick.  We did expect a quick in and out.   A blood test showed counts that we not concerning but expected for someone sick.  (Expect for his white count, usually that elevates when someone is that sick and his was not).  They did a swab of his nose.  It did indeed come back with a positive result for the rhinovirus.  The common cold.   Viruses are tricky.  I immediately asked how could a cold virus make you vomit?  The doctor said they could do whatever they want.   They affect us all differently.   We were ready to go back home and tuck our little guy back in bed.  But they kept us instead.

I suppose that is what I wanted however.  They wanted to run a wide spectrum antibiotic to cover him just in case.  Keep him hydrated.  Make sure his blood didn't grow anything, because it has before.

So Memorial Day weekend we spent, camping in the hospital.

We were over due for a infusion of IVIG and due in Tuesday morning at 8am to get it.  That would mean we would go home, then wake back up only to come back to the hospital.  They agreed he was ok to get his infusion.

We arrived home at 10pm on Monday night.  Thank you to my sister for helping with the older kids. I felt bad they missed  the weekend but I made it up to him.

The doctor on the phone was most likely right about the virus.  Even after coming home, he still ran fevers and was just knocked over.

That was the longest seven days of my life!!!!  Ok that was an expression but I am soooo glad he is finally doing better.  All the kids pants are falling off him.  But he is recovering.  Going back to school this week was really hard for us both.

We did make up our three day weekend.  We took a mini trip out of town to see one of our favorite families in Oregon.   It was just what we needed.

So far so good with his disease.  Usually when viruses invade the immune system, it can kick off a flare.  Gary's body in the past two months fought off a infection in his elbow and now a virus.  As far as I can tell, all is quiet on the JDM home front.  I hate that he has been going through so much but I love we aren't dealing with that.


Monday, May 5, 2014


We are healing.  Thank goodness.

Gary returned to school last week on Monday.  He made it all the way to Wednesday.  Wednesday he barely made it in the door.

Things I Don't Like
Every day he would come home from school and run straight to the shower.  Why.  Because he kept his coat on all day because he wanted no one to see his elbows.  My son does not like to be hot.  Never has, never will.  But apparently in the name of not having to answer questions and being ashamed, he kept his coat on as the temperature soared.  I mean, it was warm for our part of the country.  But he has always struggle with being warm from the meds and the weight of the steroids.  So it kind of did break my heart a bit.

When Wednesday rolled around, his exhaustion set in.  The swelling of his elbow was up.  Instead of swimming in the pool and visiting with his Uncle who was in town, he went to sleep.  I decided that the rest of the week would be sent at home.  Resting.   Recovering.  Too much.  Too soon.

Sometimes I wish God would leave a note on the counter so I could read it in the morning.

"Keep Him Home Today".

Fortunately I felt the message.  It was exactly what I was suppose to do.  The antibiotic he has been on was completely necessary, but completely kicking his butt.  The next day was spent on the couch.  Not eating, just laying.  Just recovering.  I suppose I should have done that since Monday.  I feel pressure thought to make sure he is learning.  He had already missed all of last week.  I have already been talked to about him being held back.  (Yes, he is protected by a 504 or the IEP, but still they bring it up how they don't think he is ready to go onto to the second grade because he misses too much school).  At one point I have to let that go and know that it will all be ok.  It will all work out.

Taking the rest of the week off is just what he needed.  By Saturday his elbow was down in swelling dramatically.  By Sunday, he woke me up in the middle of the night to help him itch it!   I celebrate that because that means healing.  The other elbow that has calcium coming out is calming down a bit as well.

His surgery site from April 1 is looking very good!  I am happy about that.

This week we are due back in for a infusion of IVIG and Orencia.  I am not looking forward to his labs per say, but I am.  I am looking forward to seeing they have returned to normal since the infection. 

After this last hospital stay, and in four days our anniversary of 5 years of JDM is here, my emotions have been, well, a bit raw.  I am having a hard time being away from him.  My heart hurts every second he is at school.  I fret quit a bit about how he is and what he is doing.  I even fret when he is next to me.  I think I may be experiencing some sort of syndrome since coming home from the hospital.  I act like, oh been there done that sort of thing, but it catches me.  

One of my fellow Moms wrote earlier this month about the mortality of her child.   I think when our kids have been through what they have, it has to be somewhat natural.  ***Anyone can go at any minute doesn't help nor does it help***   I am aware that stepping out your front door could be your last step.   No one is promised tomorrow.  But sometimes that concept feels like a pie, with a few slices taken out. 

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.