Friday, April 13, 2012

Getting It All Sorted Out

Gary is doing great.  Last week, on Thursday, we went Easter shopping.  As I lifted him out of the car I noticed his lips looked chapped.  It is not the normal dry lip kind.  It's like his lip blister on the inside.  I was overly concerned but the thought of "this isn't over" entered my mind.  Fifteen minutes later they called.  The doctor explained they wanted to continue to treat him with antibiotics.  They call it triple therapy.  Two antibiotics with a high dose acid reducer.  He spoke fast and I tried to remember everything he said.  I thought I heard him say they had never seen this particular bacteria in the blood before.  The next day Gary has his Remicade infusion (Friday).  He did well.  It was a two hour infusion so we were their for five hours.  He had a little trouble with blood pressure but nothing terrible.  We had an appointment in Seattle to follow-up with his GI specialist.    Gary was in no mood to be there.  We talked about how well he was doing with diarrhea.  That is when he informed me that he had just gotten an email from the microbiology lab.  The final ID on the bacteria is called helicobacter canis.  Yes, canis, meaning dog.  The GI specialist asked if we had a dog and said we should have her tested.  This just sends me to a blank place.  I just don't know what to say.  I have looked it up on the internet and I didn't find much.  Nothing that the doctor didn't find on the internet during our appointment.  I suppose the good part is that this blood infection is treatable.  Like before it complicates things.  The GI doctor told me he is almost positive that the ulcers they found in his colon were not from this bacteria.  He thinks they were medication induced.  Whether or not he has IBD he doesn't know.  He wants to continue to run the Remicade for at least the next six months.  See how he is doing then decide if we can stop.  He warned of reactions the body can have after being of Remicade and coming off it.  He said it will likely not happen.  I have so many questions that no one can answer because they don't know.  Like:

When we came into ER on Monday with a fever, headache, and vomiting, was that from this blood infection or from the IVIG?  And if it is not from the IVIG, are we going to keep getting IVIG or are they pulling it from his infusions? As soon as they gave antibiotics, he started feeling so much better.  How would antibiotics help aseptic meningitis from the IVIG?  They wouldn't?  Seems he had multiply things going on.  Now that he has had 4 different antibiotics, cytoxan, remicade, steroid increase, it is hard to tell where his JDM falls into this.

Gary responded so well to the antibiotics.  I mean, he is really a different kid.  Despite going back up on steroids, he seems so joyful.  He is wonderful to be around, so full of love and happiness.  Seeing this side of him, he was not before all this happened with the blood infection.  His energy is wonderful.  He is eating a whole lot and the effects of the steroids can be seen in his face and tummy but I looooovvveee it.  I love hugging him and kissing his cheeks.  The steroid temper is not really there.  He is just this new child.  We finally got to start physical therapy.  They tested him last week and this week.  The scores indicated exactly what we see.  A bilateral balance weakness, he fell way below average.  It is nothing I didn't expect though.  His coordination seem very good.  He was average with ball catching and that sort of thing.  Yesterday they tested his fine motor skills.  He was instructed to color in a small circle and and a small star with a red color pencil.  He used a lot of concentration.  He is so very cute.  He put maximum effort in.  At one point he was getting frustrated going outside the like.  He placed his finger down at the line to stop the pencil from going over the line.  She noted he gets fatigued easily.  I noticed that as well.  He was huffing and puffing just completely the tasks.  But I was very proud of him.  Seeing him sitting there using scissors and folding paper.  It was like a little message that he is going to do great in Kindergarten.  She decided to test his grip strength.  The more he did, the littler then pencil drawing became.  It was based upon a 6 year old but, the average for a six year old is 30 lbs.  Gary was squeezing no more than 2 lbs with all his might.  No biggie, just going to get him working his hands.  My hope is to have him good for September 2012.    There are issues with immunizations that we have to get worked out with the doctors.   As soon as his treatment is over for the bacteria infection we can proceed.  The physical therapy is something I am so glad he is getting.  He really did need it.  All the ability is there.  She made a comment to me, if we can just get him feeling confidant.  Until he gets those balance muscles recovered we just need to keep building him up.  She set out a small trampoline for him to jump on.  He promptly got on it and began to jump, assisted.  He tired and asked to get down.  She said sure.  He sat  to his bottom and scooted off.  She said lets try that again.  She had him step back up, and step back down.  He did it with her assistance.  The whole workout had the poor guy limping out.  But what was amazing was his attitude and wanting to keep going on with his day.  

March and April have definitely proved to be interesting so far.  I am liking so much how well he is responding to his medications, on a JDM level and for the infection.  I do anticipate a honeymoon phase getting back together with Cytoxan and with Remicade in the picture he has always responded well at first.  I pray it keeps going this time.  If it doesn't, it doesn't.  We will keep working at it.  Gary's calcinosis is looking good.  His pamidronate infusion have beeen moved to once a month but we have not done the back to back as of yet so maybe there won't be a need for it.  He is going to be getting a lot of infusions over the next couple weeks.  I have seen some signs of vasculitis under his armpits and across his tummy and chest.  But it goes in and out.  Time for sunblock again around here : )  

Thank you to my very special friends Lynn Williams, The Marcotte Family, and Sue Carpentar for send special gifts making our stay in the hospital fun.  Thank you to my baby sister who is there at a moments notice for any and everything we need.  Thank you to Grandma's and Grandpa for visiting.  Thank you to the Saas Family for spending Saturday with us.  You are all so very very special to us.


  1. my lil super hero with a crayola up his nose perfect lol! as I type this the hubs is loving the beach boys song ha! OK so it sounds like you all have had as many issues as we have had in the medical department! Unfortunately I know all to well what you all are going through and I am so sorry you all are having to! I pray for ya'll every night! Hey I have a care package for little dude and I have the address from last time but want to make sure it is right will you facebook it to me so I can send it your way!
    love you

  2. I am glad to hear Gary is doing better. It is amazing how sickness and medicine can change a person.

    Praying the antibiotics kill this infection and Gary will be on the mend.