Tuesday, February 21, 2012

Lots of things going on

So it seems Gary may have picked up a little virus last week.  Valentines evening he ran a fever suddenly.  I gave him tylenol and his fever was better.  With the diarrhea Gary already had, adding a stomach virus on top of it made for a lot of bathroom trips.  A lot.  Diarrhea has been in our news for quite awhile.  We even saw a G. I. Specialist to see if further testing needed to be done, to see if it was the medications, or what was going on.  At this appointment we also talked about his cough.  The cough has eased up but really its a cruel joke to have a cough and diarrhea at the same time.   Something has to be fixed.  We did some lab testing to make sure there were no bacteria's growing inside him or anything like that.  Funny after the appointment he came down with something.  Last week he did not receive his methotrexate shot or enbrel. It was a little tough for me because the next day on the 15th he ran a low grade fever.  The clinic was busy and our doctor was on call so it took them more than 3 hours to get back to me.   I wasn't panicked for my own sanity I wish they could have called sooner.  But instincts are still intact.  Besides he was still eating and drinking.  Monday he came down with mouth sores again.  Like normal things were HOT.  I did see places in his mouth that looked like sores or something.  So Monday, Presidents day they were not in.  Ok fine!  One more day but I was going insane.  I was up at the crack of dawn this morning leaving long messages.  They returned my call immediately.  Our doctor couldn't see him today because the schedule was booked.  So she had us run him up to our pediatrician.  It was good to catch up with him. He is the one who thinks it is indeed a virus of some kind.  He prescribed malox and benadryl for the mouth sores.  What confuses me most is back in November when he flared, the inside of his mouth did the same thing.  I do admit this does seem to be a bit different but still.  We headed to Children's to do pick up some medicines.  My phone rang as I pulled in.   It was the GI clinic.  Apparently the sample we gave a couple weeks ago didn't give what they needed.  Just so happens, Yay! we were there to do it again.  Then my phone rang again saying they were filling a prescription to slow down his colon.  I am a bit nervous it will slow it down too much and we will have the opposite problem.  I just want his tummy pain to stop.  Tonight, after his first dose, we had success with diarrhea easing up but not the stomach pain so far.  But its only been hours.  Keeping a close eye.  If this doesn't work they are talking about scope him from both ends or cutting back on medications.  Both sound awful and scary.

I am going on vacation.  My children are staying with my sister.  Yes, this makes me even more nervous to leave for 5 days but the trip was a gift from my brother.

3 comments:

  1. Hi Erika,
    I hope you have a really good vacation, you need the rest.

    Praying and praying for Gary and hoping he doesn't need to be scoped but if he does, then I hope it goes very smoothly.

    <><

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  2. Ericka,
    Oh my goodness doll it seems Gary and I are going through about the exact same thing. I had to read this twice for it was almost like my post I did a few days ago titles Whoever said winning isn't everything obviously never had DM! I am having the well runs problem as well to the point that I literally you know what on myself in the van. It was terrible, embarrassing, miss Kelcee said mommy I think we need to turn around I smell something bless her. Than she said does Car E that's what she calls our van have a nose ha! It was so terrible. I talked to my drs. and it is a combo of the methextrexate, ivig, antibiotics I am on and it caused this side effect lovely! I am hoping that Gary's is just a side effect as well and not a GI problem. I think I may be able to ease your mind of the mouth ulcers. I get them terribly after I take the methetrexate. It is a side effect JHU told me and they give me Magic Mouth for it. It is a combo of malox a numbing agent and something else to ease them up. I don't think it is the actual disease but more of a side effect. I do get ulcers from the disease as well when I am flaring but I can tell the difference a bit between them when I take the methetrexate. I hope this can be of some help. Thank you so much for easing my mind over the methetrexate issue. I go in for a round of chemotherapy and ivig next week all week and I am hoping they have zofran at the hospital. One hospital around here is completly out. My neighbor is a nurse at it. If it isn't one thing it is another. I am so glad you are on vacay and able to clear your head sweets. You are a great mommy and a great friend. Sounds like we have had a shitty few weeks literally ha! Sorry had to say it...the hubs has been having Kelcee going around the house going diahrea cha cha cha lol...and last night he had her bring up my sweatpants he cleaned that I you know what in and she said here are your diahrea cha cha cha pants hahahahaha yup there ya have it lol!

    xoxo
    Sums

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  3. praying for you girly

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