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.

MRI Try

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.