Friday, April 27, 2012

Monday Turned It All Around

So after Friday's appointment and joyfully skipping home that we didn't have to stay there.   We knew we would be coming back Monday but still was good to go home.  The weekend was good.  Great weather.  Saturday we had Elexis's final soccer game.  Sunday we went to a Relay Race out in North Bend.  Fun.  Monday we checked in at clinic at 10:30am.  It was definitely hard to roll out of bed for everyone after the busy weekend.

Not much had changed with Gary from Friday.  The doctor took the time to do a CMAS test.  We typically don't do those because of his age.  But now that he is older she wanted to get a baseline.  I did bring up the swallowing thing again.  Over the weekend his coughing while eating started to increase.  Drinking from a water bottle triggered a cough/wheeze pull over the car are you ok incident.  The family mention they noticed more and more something seemed off.  I didn't emphasize it.  Only mentioned it because of the doctors reaction from it on Friday.  She by no means dismissed it, but maybe could have taken the time to listen closely.  However, it was the first day we noticed something so we didn't have enough times to support warranting a test.  Again, she said brushed it away.  His hoarse voice turned a little nasally sounding as well.  She did noticed that but during a speech pronouncing  test, he seemed to have no trouble.

After the appointment we headed to the floor for admitting to get the ball rolling.  We had to share a room but our roommate was an wonderful.  A little peanut of a baby who made little sound because he couldn't.  The resident doctor came in to meet and greet.  They are responsible for putting in all the orders of medications.  It is basically like have 2 clinic appointments in a row.  Sometimes I will forget things because I already went over it in clinic less than 20 minutes before that.   The beauty of it however is with the resident doctors.   They can be difficult to deal with but will order tests.  I explained to her what we have been seeing.  She said, "let's order a bed side speech consult."  Speech consults also evaluate swallowing.  Later that day she arrived with a plate of food.  Yogurt, bagel, chips, and juice.  She was familiar with Gary.  I recognized her from when his swallowing was effected at the beginning of his diagnosis.  We started out with the yogurt.  Right away we both looked at each other as he grabbed his nose, his eyes watered, and he sniffed.  The rest of the food he did fine with.  Like in the past week, it wasn't all the time, just hear and there.  Signs.   After her evaluation she said he definitely needed a swallow test done.  She said she is seeing obvious signs including the food would change the sound of his voice.  This indicates his muscles aren't clearing the food completely.

Before speech came down to our room, the resident suggested we try giving him an MRI without sedation, totally awake.  Well, ok, I guess.   So that is what we tryed.  We barely got to the door of the MRI room and he started to become very upset.  Eye roll.  Please people.  In the past month he has had a colonscopy, an endocscopy, a spinal tap, repeated IV starts and blood draws.  My child isn't easy going like that when it comes to things like this.  I don't blame him.  Even giving it a try was not necessary.  No need to cause undo stress.  Of course I let them try because it would just be once less thing that goes into his body.  I admit I hoped it would work out too.

The MRI was the next morning because he need to have nothing in his tummy.  Placing him on the table to be sedated was just as bad.  Anything that runs through his IV is always sensitive.  He ouches and gasps.  They explained the sedation med can sting pretty bad.  They try and put some numbing stuff in to help but it didn't.  As soon as the milky white liquid was pushed into his IV he went into hysterics.  He started to bang his head and flip his body back and forth in agony.  Less than ten seconds later he was snoring.  He quickly drifted back, we layed him into place.   An hour and a half later he was out again.

CONVERSATIONS With the doctor
After the medical team received the evaluation about the swallowing, our rheumatologist popped in.  She looked a little.....not mad....but maybe frustrated and couldn't believe it.  "So its real, that is what you were really seeing."   She shook her head then proceeded to dive into her own mind.  We kept going over the what he has had, when he had, the order of the past couple months.  She said she was very displeased with the swallowing.  She stepped into the room and said, "so its real."   She went over medications.  Suddenly we were adding drugs back on the list.  Including IVIG and Rituxan.   She admitted she was scared to give him this combination.  We talked about more steroids.  Going back up on the home dose.  Questions and answers bounced back and forth between her and I.   The port word even came into the picture.  Weekly steroid pulses until he recovers.  The main anxiety she was having was Rituxan and Remicade and Cytoxan.  The MRI done the next morning did confirm the funny limp was from inflammation.

The good news is he passed his swallow test.  That means when they were taking live video under Xray of him swallowing, all seemed fine like I said.  I wondered with those results if that changed things.  Like maybe she would want to hold off on running the Rituxan.  The doctors came in and said no.  They wanted to proceed.  I needed time.  So I asked that they give him his steroid pulse that night then run the Rituxan so I could really decide if this is what was best.   It was a plunge kind of decision.  Just do?  My reasoning came down to this,  He was due for his 4 month mark of the Rituxan dose.  I did not think with the results of stopping the cell cept, tacrolimus, and enbrel, we dare not stop another medication.  Even later that evening one rheumatologist came in and wanted to talk.   She said they called an expert who had recommended the Enbrel shots.  A point was made regarding the Remicade.  There are a few case studies in adults where the Remicade actually made dermatomyositis worse.  They wanted to know what I thought.  Right now I think no.  I don't think remicade is responsible for this sudden muscles weaknesses. I think its the JDM protocal taper effect.  < I just made that up sort of.)  But with this disease, taper is the name of the game.  And the doctors know that.  They also suggested it could be from going from 5ml to 3ml in a matter of weeks.  Gary has proven to be sensitive to steroids.  When on and trying to go off them.  Still unknown.  I think the most important thing is that we need to bring the inflammation back under control.  One of the most agitating things, Gary's labs are not bad at all.  We can say that is good?  But labs never tell whole tale.

Gary is home and doing great.  His breath smells bad from all the medication.  They put him back on fluconzole for thrush.  Not even hours after Cytoxan was finished, thrush appeared in his mouth.

It's twisted and complicated.  Just want him to keep smiling.  I will take care of everything else.

Wednesday, April 18, 2012

I'm in a spin, Not loving the spin I am in.....

Today, April 18th, was our clinic and cytoxan admission.  Well, it was suppose to be.  Our appointment was at 2:15.  Gary weighed in at 46 pounds.  That is seven pounds in 2 weeks.  It certainly looks like a whole lot more but it is temporary.  His energy is off the charts.  So far off the charts his body isn't keeping up with him.  After physical therapy on Thursday last week, his walk went to a limp drag.  He hobbles horribly.  Complains of no pain, just hobbles faster.  The limp drag and sudden drastic weight gain, reminds me of Quazie Motto.  His attitude remains above the clouds.  Above anyone else's on earth.  He is so very happy.  A few unnatural tantrums have crept in but those far outweigh his sunny disposition that we have not seen.  I couldn't paint a picture with words for our doctor.  Saying he is a new kid doesn't do it.

We went through the regular conversation.  Fevers, no.  Sleeping well.  All is well.  One little detail that I discovered that morning was swallowing.  During Gary's birthday celebration with the family we video taped him while he ate dinner.  I was watching the video and noticed he was grabbing his throat when the food went down his throat.  At the time I noticed but just stored it in my memory.  My memory was tapped into this afternoon before we left.  He was eating chicken nuggets.  I glanced out of the side of eyes and saw him grab his throat and wince.  I asked what was wrong.  He said the food won't go down.  No choking.  No coughing.  Why is it almost painful when things are dismissed?  Not listening.  Dismissing to quickly.   Moving to fast.  Frustrating.  It is a scenario that has played out to many times during the past three years.  Mothers are to be listened too.  This to shall come to past.  If I was the doctor,  I understand.  I am looking at a child that has gained weight, there is no trouble with food making it to his stomach.  This new, as is his limp.  His limp isn't just any limp, its a JDM limp, neither is his swallowing.  Not related.  Especially being pulled off five different medications he has been on for a long time.  I just have to breathe, when I really want to scream.  I know it seems ironic to most people when he is feeling so much better.  Good,  doesn't take away the fact that we have just come of a flare, blood infection, and major med changes followed by symptoms.  Oh what fun! > : (

In order to get our infusion down to once a month, we came home tonight.  We are returning Monday night for Cytoxan, Pamidronate, and Remicade.  Remicade is a little early, but just this once, too get these to line up.  Our new rheumatologist decided to also discontinue his Rituxan infusions.  She felt they aren't working.  On a recent trip overseas and some convention, it was discussed how there particular country doesn't use Ritxuan.  There was some confusion between the doctor and I.  We had previously talked about Remicade being used for JDM.  Traditionally it is used for IBD.  So she asked me to ask my JDM Mom's if anyone was on Remicade for JDM.  So I did.  Not many.  She walked into todays appointment asking about Rituximab which is Rituxan.  She told me they don't use this medication over there.  I would love to through out a so what! right here but I know I don't know the whole story and her whole point.  This will all be cleared up.  This appointment was like being on a merry go round that wouldn't stop.  This transition is proving to be a tough one.

Coming down to 3ml on steroids though.  She ordered a MRI on Monday of his hip to check for necrosis which I heard can happen with high dose steroids.  We are gonna steer clear of the internet until after that MRI on Monday.  No reason to get myself all worked up.  I already am.  I am thankful he is doing well and better and all that.  It doesn't take my fight away.  It does make it easier.  I almost typed it doesn't but really if was very sick or in bad pain, well then, it would be much harder.  My favorite!  Perspective.

Now it seems to me that our doctor is going after these calcium deposits.  They are looking much better so that is a good thing.  Just have to tackle the rest, not just one thing.  I know the doctor realizes this but the whole oh yay, alright, thing just erks me.  You can break it down, explain it, try and help me with my feelings but until you walk in it or even at that, no one can ever put my shoes on, they don't fit.

Gary's Medications

3ml Prednisone
2.25ml Cellcept
2.5ml Tacrolimus
1/2 tab of Hydroxychloroquine
.75ml Methotrexate Injections
25mgs Enbrel Injections
IVIG Infusions
Rituxan Infusions
.8 Enalapril
Folic Acid
Calcium/Vit D
Cytoxan Infusions
Remicade Infusions
5ml Raninadine

Do I approve.  That is what I was asked.  I think taking away too many at one time is a little scary.  I suppose all I can do is go with it.  I asked her when she anticipates taking him off Cytoxan.  She wants him to go at least for six months then we will move him to a home dose of a different immune suppression.  Imuran or another she mentioned.  That will bump us right into Kindergarden.  If she sticks to this schedule, August will be the six month mark.   I guess what I would like everyone to consider is the steroids and "how well" he is doing.  He has proven to really like steroids.  His body responds to prednisone.  I don't want anything masked by the immediate effects of removing these medications.

I asked her if she had heard anything further regarding Gary's blood infection.  She did get the report that the bacteria was not found in the biopsies they took during his endoscopy and colonoscopy.  She doesn't think it came from the dog.  She thinks it came from an infection we saw under his skin.  It was a calcium deposit or a molluscum.  I have lost count of opinions.  

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.

Friday, April 6, 2012

Sorry the continue as taken so long....

 After a few days he only gained strength.  His numbers got better. After what seemed like over of week, they were talking about sending us home.  When we first returned to the ER I was assured by several medical professionals that Gary would be receiving a picc line.  As much as I didn't want my little angel who had been through so much already to have to have something like this put into his body, I strangely looked forward to it.  I looked forward to not having to poke him over and over again over the next couple of weeks.  So on Monday when anesthesia came in and went over procedure I had come to grips, accepted it.  Not five minutes later, infectious disease department walked in.  What struck me as just plain arrogance they began to speak.  I corrected them they had his history wrong.  She explained from what she understood Gary was stopped on MMF and Tacrolimus because he was doing so well.  They had started him on cytoxan and remicade to continue treating the IBD symptoms and JDM replacing the MMF and Tac.  Wrong.  I quickly corrected them.  Not sure they were even listening to me.  They quickly pointed out they were their to make sure he did not get a picc line.  Ok.  Spinning.  Fine!  Since he is doing so well they said they are more apt to treat for 24 more hours and send us home.  Depending upon the infection and symptoms we had been told 10 to 14 days.  Then 7 to 10.  He had already gotten 6.  Their recommendations were to not put in a picc line and send us home.  As a mother, I want to go home, and oh one little important detail, I don't want my child to be so sick something really bad happens due to someones else's neglect.  I wouldn't have it.  I don't care how well he was doing or what he responded too, they still at this point did not have an id on the bug.  This meant they did not know the exact way to treat it.  They could guess the 2 broad spectrum antibiotics they had already put in already nailed it, but could they know for sure in a immunosuppressive 5 year old!!!  Think not!  Rip me in two why don't you.  I couldn't figure out why they were making me angry.  Who wants to stay at the hospital.  I don't.  But I also don't want people making assumptions.

We were discharged Monday with no picc line.  Celebrate, for sure.  Nervous, definitely.  He continues to do well.  I am so knotted up about everything I can barely breathe.  Today, we had another remicade infusion.  So much is going on.  I have been told four different things about this bacteria.  The latest is it could have come from our family dog?  He now is on what they called triple therapy.  Amoxicillan, something thats starts with a C and another tummy protector.   Heart Attack any one?