Monday, May 28, 2012

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!

1 comment:

  1. So your blaming the decision of the port on me huh hahhhaha just kidding! I love you and Gary to bits and we haven't even met! I will tell you that my veins were fried, burnt from chemo, benadryl, my arms turned red I went as long as they would let me until the nurses refused to run my meds until I got a port. They couldn't bare sticking me up to 17 times a day...and my veins would blow so much it was insane! I will tell you I thought I had made a mistake with the port but it was just my stubborness to do it awake that caused all the trauma and flare of DM and loss of voice for two weeks. To tell you how shot my veins and arterys are it took them 45 minutes to do a 10 minute surgery for they couldn't get the cather to thread but its in there and after the drama of nurse ratchet fighting with the dr. where the port was ha and he placed it hahahaha they finally know where it is and althought it is discomforting it isn't as bad as a needle hurts just not as bad and they don't have to restick for bloodwork etc., all comes from the port...I am starting to get used to Hope thats her name lol, yes a if he gets one...make sure it has good blood return so they can get bloodwork too, and put him to sleep the awake thing is not good lol! IM sad ya'll had to go back! Bless him my IBS flares when I am in the sun, stressed or having a flare...I usually have to take zofran to calm it down. Sorry your stay sucked. I have had that experience before too, omg and when you get a Dr. that doesn't know shizit from shinola and says um lets try gluten free or da da da and you look at them as if you want to gouge their eyeball out with the iv they just stuck you with and say so your telling me I just went through all this hell and I could have been on a certain diet? Then when you ask your team they say oh no way you can't diet with all the meds you are on you wanna scream and hide under some bed...I get it so much my sweet friend! You are a great mommy, you will do everything to get Gary better, don't second guess you, ok, you do what you think is best for YOUR SON, and I will be there every step of the way if you need support, to cuss, I would drink if I could with you ha! and any questions you have I'm hear got it good lol