Went Back

As much as I didn't want to we had too.  Our monthly infusion was due.  Wednesday we were scheduled to check into clinic at 10am, then on to physical therapy before we hit the pool.  Unfortunately, as we pulled into the hospital Gary had an accident in his pants.  There went the pool.   It honestly instantly upset me because I thought it was over.  He had gone for 24 hours without going potty so I thought for sure the next time it would be over which would have confirmed a virus.

When we went up to clinic, I was close to tears.  I didn't want to run Remicade.  I didn't want this to be an issue.  The nurse asked me about meds.  I looked at her and said, "I am having a moment.  I need a minute.  I am so frustrated.  I am not frustrated which anyone here.  I am frustrated with the situation.   I thought for sure this was a bug."  I went on and on.   She was very comforting.  In past months, she had not said much to me which I found strange.  I wasn't offended by the way she was stand offish.  People have their reasons.  I am realize not everything is about me.  So I just went with it.  She was polite enough so.  Suddenly, in the rawness of our emotions, she let it go.  She had recently had a baby.  I heard about but wasn't given details so decided to mind my business.  As tears filled my eyes she let me know her newborn went 17 minutes without oxygen at birth.  She said despite what tests say she does not seem to have the brain damage she says she does.  Her baby is making the progress she is suppose too.  They take each day one at a time.

I thanked her for sharing her personal experience with me.  I told her it meant a lot.  We laughed as I asked her not to tell them I was crying.

When our doctors came in we talked about a plan of attack.  She gave me a couple different options.  We could run the Cytoxan, IVIG, Methopred, and Pamidronate as planned.  Then the next week another pulse with Remicade for what we thought was the return of his IBD.  Second was to run the Remicade, methopred, pamidronate and wait on the IVIG.  Push the IVIG and steroid pulse to the next week.  I wanted to go with the first option.  I wanted to give his bowels more time.  This potentially still could be a  bug.  But what I didn't like is this virus is making his JDM go bonkers.  Labs are fine but that matters not.

The hospital stay was the worst.  Well, I cant think of others stays that matched but, shared room, very small, next to the nurses station.  Our roommate had to dominate the bathroom because he was there for colon issues as well.  Fortunately, Gary didn't not have to use the bathroom.  In twenty four hours plus, we did not once enter the bathroom in our room.  Gary used the urinal.  I had to walk down the hall.  I could list all the mistakes and details.  All around, it truly was terrible.  It was even more terrible when the doctor came in that evening to suggest maybe the return of Gary's diarrhea was from milk or from gluten.  I was close to ripping out his IV and walking out of there.  It is the style I am not use to but just the same it was the last thing I wanted to hear.  Are you telling me we gave him Remicade because of simple intolerances?  Why wasn't that explored before running three months of treatment.  By the way that same treatment cured his diarrhea within 24 hours of running.  How is that an intolerance.  I was ready to run.  I am not against it.  It very well could be.  But a biospy and blood panel said there was no evidence of that.  The night was long.  Gary was miserable.  Although the IV start went very well, the infusions themselves were hard.  I am strongly leaning towards having a port put in.  His veins seems to be burnt or stripped or something.  He acts like he is being infused with acid.  I'm just so done with it.  I know that doctors will be upset with me.  I know my family will too.  But I have to do what is right for him.  He can't do this anymore.

Thank you Summer!

Don't Want To Go Back

Instead of the gagging being a side effect of methotrexate, it actually wasn't it.  It was a start of a storm.  A stomach flu storm.  Wednesday night he had the return of the evil diarrhea.  Thursday, tummy pain.  More diarrhea then vomiting.  He continued to run around so it was confusing.  Friday morning, vomiting and diarrhea, from both ends.  Oddly enough he was not "ill" but was getting run down.  Friday night, with my high heals on, all dressed up for a birthday party I was suppose to go to for a good friend, I spent snuggle him, worried.  Mom slipped back into her pajama's,  and back to bed we went.  Gary slept a long time.

All of his calcium deposits were enlarged.  No fever, but he began to throw up the water he drank and continued with diarrhea.  Saturday morning I had enough.  We called the rheumatology doc on call at Seattle Children's, packed him up, and headed in.  I didn't feel like I could keep in front of his hydration.  He was red with a rash that looked like he had scratched up a storm which he had not.  This bug denoted on Wednesday evening because that is when the rash appeared.  Much like the one he had at diagnosis.  His JDM looked like it was glowing bright.

Once in the emergency room, labs were taken.  They gave me a choice to take him home if I felt confident I could keep him hydrated.  I didn't feel that way.  His food aversion and now drink aversion was troublesome. Hydration through IV was the best bet in my book.  They agreed and admitted us.  That night he put a special show on in the bathroom.  Never seen something like that.  I mean, on the walls even.  Explosive to say the least.  Every time he nibbled on food it was consequence.  We waited till Sunday night to leave just to make sure.

We discovered he has open sores on the insides of his cheeks and on the roof of his mouth.  They don't seem to bother him with pain.  The more I get a peak of it I think it might be thrush.  He is on medication to treat that so not sure why it is not working.

I am so glad he is doing so much better.  We weren't sure exactly what he had but now everything seems to be subsiding, everything is coming back on line, it looks for sure it was a gasteronitis bug of some kind.  I do think it is doing nothing for his JDM but it is a wait and see.  His labs were fine.  His C. reactive protein was elevated again but the virus can cause that.  Right.   Sure it can.  

Today he was well enough to go get his eye's checked.  Checked out A okay.  Then we went onto PT.  On the way there I gave him his vitamin D and calcium chocolate chew.  He told me it tasted bad which he had never complained about before.  He chewed it much longer than he has ever.  It somehow turned it into a taffy, stringy like, texture which suddenly, he decided to gag and choke on while I drove down the road.  It gagged him and once again, he brought up the entire contents of his tummy.   All over the back of the car.  I couldn't get him to talk to me so I began lane changing frantically planning a straight shot to the town's emergency room which was 6 blocks away.  I yelled for him to talk.  He couldn't because he was to busy heaving.  I finally saw a gasp of air.   Then another.  Then another.   Then the car smelled like a someone rode the merry go round to long.   If I have to be around barf another second , I am gonna lose it.

Well not really.   But I am growing tired of it.  A little buck naked action in a parking lot at the grocery store to change clothes.  Ran in bought paper towels and 409 cleaner to so some damage control in the back seat.  It was interesting he had a hard time walking around, grapping at his legs periodically saying his legs hurt.

Later at physical therapy he definitely was crabby.  He was not cooperating with any body that day.  She tried stretching him out and said his range of motion seems good today but he is also tender to the touch he seems like.  She made a comment to me that when he doesn't want to do a certain task, he says he is tired.  If it is something he enjoys then he does it no problem.   I wasn't sure how to take that.  I mean, it is true.   But don't we all?  I already knew this about him.   Gary's brother and sister are the same way.  Something they don't enjoy, well, let the drama roll.  He does not however, fake anything.  I don't think she was implying that but unfortunately after a long weekend in the hospital, a long day, I must have been sensitive.

Tomorrow we have to go back.  I really don't want too.  I even contemplated asking for a reschedule for later in the week.   I can  only imagine how Gary feels about it.   He needs to be followed though.  He needs his treatments to make sure we are staying in front of the JDM or extinguishing fires from this nasty bug.    Five days of not being right.  One thing we have to look forward to tomorrow is before we go to the floor to start his IV and get meds going, we are meeting PT at the pool.  She is going to do some work in the pool.



He is in good spirits, so I am grateful.  Tired but grateful.

DAD GOING DOWN
Since it was the weekend, it was nice to have my husband with me finally.  Well until the IV was started.  My husband was holding his hand while Gary screamed, when his head went down.  The nurse called over to him, "ARE YOU OK SIR".   He was pale and spinning.  We told him to sit.  It distracted Gary for sure but we thought Dad was going to hit the floor.  It took him about ten minutes for the color to return to his face.  This is the first time a relative has had this reaction.  My niece did the same thing.  Oh boy.

WHAT MAKES  ME SAD
The happy boy is gone.  He was here when the antibiotics were in his system.  So was his strength.  His strange euphoric happiness we just couldn't get enough of.  He was good hearted, loving, caring, amazingly happy.  He is back to the ornery, inpatient, not on top of the world kid.  I have even asked the doctors, why?   Why is that?  Why is this guy back?  Not saying I want to run antibiotics but it just seems funny to me.

Can't Keep Him Down

It's hard to keep a five year old down.  I know that is a good thing, but still.

Gary had a quick steroid pulse yesterday.  It was methotrexate day as well.  So instead of an injection, they just put it through his IV to spare a poke.  Whenever they get a good vein, he can taste everything they push through the IV.  We went to the park after the infusion.  (Get him out, change it up, make him feel better).  The whole time he kept gagging.  He'd be playing on the slide, make a random sound like lunch was on its way back up.  I kept asking him if he wanted to go.  NO.  Finally I convinced him by telling him I was going home, he could stay at some random park by himself.   He took a long nap on the way home.  The nap continued to the couch.  He was miserable when he woke up.  He couldn't stand without getting light headed which was making him beyond mad.   I gave him tylenol, zofran, he was out the door.  He was very emotional and not feeling well.  I guess this surprised me because he has felt a lot better getting a lot more and longer of an infusion before.  I was wondering if maybe the methotrexate being put right into his blood stream verses being injected made a difference.

Distraction technique number one:  combining baking soda and vinegar in a bottle which was neat for oh, thirty seconds.  We decided to take him to the lake for a distraction.  The weather has been nice but cool weather was rolling in.  At 8:30 pm, there he was, sitting in the freezing cold water in the lake, refusing to get out.  He cried and said he found a warm spot, it felt so good.  We live in WA,  temps are still very cool, even the air.  I find myself getting frustrated because as a mother, who in there right mind who let there healthy five year old soak in a cold lake as the sun goes down.  Oh but there is me.  I told him FINE, freeze your butt off then!  His color went from wispy cloud to eggshell white.  (Yes, that is the color of wall paints but work with me here, trying to give you a good description).  Don't need to judge.  I am too busy judging myself.

 I do get his elbows and knees are starting to bother him here and there.  The calcium deposits did shrink with recent treatments, but his elbows look larger to me.    It could be from the steroid weight but it doesn't look like it.  They seem more solid.  He has even randomly complained about feeling a pinching.

It is amazing how the steroids work fast.  His walk and strength will quickly improve, even later that day.  We are working hard with physical therapy to try and get him as ready for Kindergarden as we can.  Next week we have our big infusion.  Cytoxan, Pamidronate, steroid pulse, and the return of IVIG.  Should be interesting.  Our physical therapist mention she may try and get him some pool time.  Hopefully we can do this before he is admitted.  He would really love that.  We are under orders to stretch.   Lots of stretching.  She stretched him out on Tuesday.  He was crying it hurt.  But after she was done, there was a difference in his gait.  

I still worry a little.  At the end of the day he will walk in looking as if his body is using everything it has to make those legs go.  We definitely see good days, and we also see days where he acts like he is too tired to talk.  JDM has a war on its hands!   Come on meds, keep punching for him.

Rituxan Infusion

It became clear to me that by Sunday, maybe Monday morning, we should not have skipped that steroid pulse on Wednesday.  His limp kept coming in and out, the good ol' red rash on his face returned.

Tuesday we had a physical therapy.  We love our physical therapist.  She is knowledgeable, and does well dealing with Gary.  His reports came back and it was what we expected.  Below average to well below average for bilateral coordination and balance.  So the plan is as soon as he is to a infusions once a month we well step up therapy.  We are hoping this summer to do twice a week, and occupational therapy, like hand strengthening ect,.

When I told our doctor that I think we should have went ahead and pulsed him last week, she brought up one more time, the port.  She warned me that this was the last time she would mention it.  She said that she is not in favor of it, but if I am, then she will put the order in.  Because it looks like we are going to go to once a week infusions for a little bit here.  I said no.  Then we had a 5 poke infusion start.

Just going with it right now.  Making sure he stays walking and swallowing.  Making sure I stay in tune with his symptoms.  Tired.

Wednesday Clinic

We packed to stay the night, but with a new doctor comes changes.  She is different from our other doctor.  Thinks out loud.  Thats ok.  But it does spin me a bit.  We packed for IVIG and a steroid pulse.  Which means we packed to possibly stay overnight.  But just the same we were going to be admitted.

Good news is he is doing better.  Well enough to skip this weeks steroid pulse intravenously.  His limp from his hip improved a lot.  When he runs, you can hear it, barely see it.  Means?  Means I can hear a quick thump thump.  A regular run is a step one right after the other, in rhythm.  His is more of a one two one two one two.  So the whole hip lag drap thing is so much better.  I have seen little to no evidence of swallowing issues.  It does not help he came down with a bad cold Friday.  I was surprised they weren't more concerned.  But with no fever,  energy in steroid Zone,  can't treat something that is not there.  He has lost his voice from the cold so the doctor was not pleased with the quality, but he has a cold.

Remicade
So they stopped Remicade.  They orginally started Remicade not to treat JDM but to treat his colon.  The speculation that the Remicade might be making him flare.  Agree.  Not entirely.

So we held IVIG.  Part of me thinks she is still going to cut it out completely.  We return next week for the next dose of Rituxan and a steroid pulse.  That will be all with the Rituxan for another 4-6 months.

The next week after that we return for another overnight of Cytoxan, IVIG, Pamidronate, and steroids.

We were sent home to come back next Wednesday.

Friday (5/4) we had an emergency dentist appointment.  The day before Gary woke up to what appeared to be a toothache.  He was rolling around on my bed at 6am, crying his tooth hurt.  I immediately gave him tylenol and called the dentist.  It was 7am and they were there.  I couldn't believe.  Gary also see's Children's Hospital in Seattle Dentistry Department.  They deal with immune compromised children.  There is a certain special handling these kids need.  They got us in at 10am.  The dentist saw no immediate evidence of an abscess.  But he does have a few cavities.  Gary is to young for xrays.  The dentist was very nervous so she talked to me about putting him completely under to take care of everything.  They will put him under general anesthesia.  Do xrays, fillings, cleaning, ect,.  I know what you are thinking.  For a dentist?  Really is it necessary?  Yes.  It is.  Gary has had extensive medical procedures that have made him intolerant.   Extremely intolerant.  That was evident during the MRI we tried to get him to do without sedation.  The dentist was even more concerned and motivated to get an xray done when she saw he was on pamidronate infusions.  She explained how these infusions can change the composition of his bones.  She said his baby teeth might not fall out the way they should because of the strength this creates in the bones.  Good add another to the list.  So he will be getting some sleepy juice.  She said it was important to make sure he doesn't have necrosis in the jaw from the pamidronate.  This means the bones dies.  It has not been seen in children, but has in adults.  I love it when it is explained to me, "we are exploring new horizons with this treatment and how it effects dental bone development."   Oh how fun.

He is still trying to recover from a cold he caught.  He has had it for 8 days now.  But it doesn't make him feel bad or sleep bad, so that is a plus.  His heliotrope rash is there on and off.  It is faint enough someone who doesn't know him will say he looks good.