Monday, July 22, 2013

Flaring in eyes

I haven't updated in a while.  Everything was going fairly well except for a few complaints of pain here and there.  Jackson had a eye appointment the last week in June and his eyes are flaring up.  Not the news wanted to hear, so disappointing!  We had just pushed his infusions out from every 4 weeks to every 6 weeks 5 months ago and apparently it wasn't a good idea.  We were given the choice to either start coming every 4 weeks for a infusion again or stick with our 6 weeks and take steroid eye drops 3xs a day.  Very hard choice as they both have disadvantages and side effects.  For now Jackson choose the eye drops.  The following week Jackson had a infusion and appointment with Rhematolgy.  Dr. Vehe had said if there are still cells in his eyes in beginning of August he is going to up his dose of remicade.  I hate that idea but the steroids can only be short term use due the damage they can do in the eyes!  Upping the methotrexate just wasn't a good idea right now as Jackson has hard time with the methotrexate (chemo) making him sick.  So I am praying his eyes will clear up soon!
Brynley has also had her own set of problems since June.  In beginning of June she got extremely ill with high fevers going all way up  se was very lethargic.  I brought her into clinic one day, urgent care another day and er on a sunday night each time being told she just had a virus.  I had even mentioned her breath smelled really funny like she had a infection or something in there.  Still told she was fine just a virus.  Well as a mother something kept telling me something was just not right.  So for a 4th time I brought her back in.  When we left the house her temp was 101.5 by the time the nurse checked us in it was 104.9!  Very scary.  They were all running around and going to give her a tylneol supposortory.  This time the doctor was very thorogh and after some tests we found out she had strep throat.  She had been suffering through it for at least a week if not longer.  After being on antibiotics she didn't really seem to get better.  She was still whiney and her knee started swelling.  So back to the doctor we went for a 5th time.  They were very concerned and did a lot of blood work, exam and ekg.  She was diagnosed with streptococcal reactive arthritis and put on prophlax antibiotics for 2 months.  She started to get better but then on a Saturday spiked another high fever.  So again back to the doctor for 6 time.  This time the doctor did more blood work and she had some blood work that was not normal.  Some proteins and white blood cell count were high.  Brynley was diagnosed with a heart murmur when she was a baby and they did a ekg and diagnosed it as a innocent heart murmur.  Well due to the rececnt infection that went on for awhile before being caught and a change in the sound of her heart murmur they thought she should have a echocardiogram and see a pediactric cardiologist to make sure her heart is ok.  We are hoping it is nothing and that the strep didn't spread to heart and that the heart murmur is still innocent but need to know for sure.  I don't know that I could handle another child with her health problems!  I will update after echo is done and results are in!  Please keep our family and especially my children in your thoughts and prayers!

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