Well, somehow my son has Roseola. How the Hell? The kid who hardly ever has a fever, had a low grade fever and then when that went away, a massive amount of hives. Such itchy miserableness, and there is such an incredibly minimal amount we can do to help him feel better. Nobody else in the family has it, don’t even know where he got it. For now, we’re trying to take care of the symptoms and get him through the next three days of Benadryl and hope the hives pale and finally go away. No fun in our house for sure.
We’re pretty used to him being sick, seems like it’s a monthly occurrence. Last year, Bradley had a sinus infection hit him in November and from there we hopped right down the rabbit hole into a spiral of health vs illness that left him very few days of good health. It seems like no matter what I did, I couldn’t get him healthy again. Worse, his pediatrician had health issues of his own and we had very little continuity of care for six months. He had good care, but things get lost in the mix when you have to continually reinvent the wheel every time you take him in to see the doctor. And when he isn’t the doc’s primary patient there is a certain sense of caution and definite desire to be as conservative as possible, but he needs a more aggressive approach when he is sick so often.
Things changed when he returned to Feeding Therapy. I learned long ago from the wisest woman I have ever met, how important feeding is for his speech and I know that his ability to be healthy is paramount to his ability to keep as much reflux to a minimum as possible. What I hadn’t foreseen was the importance of the residual he keeps in his mouth after each bite. At therapy, they started to make him drink after every bite in order to clear all the residue from his mouth so that he doesn’t swallow residue when he isn’t ready. The idea is to control what he swallows and when, So for the past eight months, he has been taking a drink after every bite. And for the last few months, we’ve had a period of better health. He’s still not the healthiest kid out there. But we’re having less setbacks because he is having less retching episodes that give him too much mucus and then get him sick. So we’ll take it.
This new episode has taken us by surprise. His temperature typically runs low, constantly about 97ish. So for him to run a fever was odd, for him to have hives - this has been a whole new world for him and us. Flashbacks to the hives that Eric had that eventually led us to his asthma and his heart failure sure doesn’t help. Me trying to ask the right questions to make sure Bradley’s new pediatrician understands me and can follow the road of my concern without thinking I’m a nutcase is a whole other issue. He probably does think I’m a nutcase, but he listened a long time to Bradley’s heart and lungs. The lungs he has to wait Bradley out, my guy doesn’t understand that he needs to take deep breaths, etc. etc. so I truly appreciate that our new pediatrician understands these things about Bradley like our previous docs did and will wait him out.
We miss our pediatrician, but he deserved to retire just like the one before him. Good people deserve to retire and enjoy their lives without worrying about all these little kids and their problems...that being said, this parent sure wishes that everything works out with this new doc - that he cares for Bradley the way the other two did, that I can count on him on the darkest days and that he’ll celebrate with us the little milestones that Bradley has. I want to trust him with my children, even the oldest who is not as complicated as the other two - but especially with my complicated two. And I want this because I know that their GI is going to want to retire soon and that is painful enough, starting over is just miserable. I’m ready to have a pediatrician we outgrow rather than another doc retiring on me who holds all the pieces.
I want a lot of things for sure. Right now, I’ll settle for a night where Bradley sleeps and a day tomorrow with less hives for my little guy. If I have too, I’ll gladly take the better day for him tomorrow. Ready for my little guy to get back to his normal.
Probably a long night ahead so better get to it. Good night all.
31 Blogs in 31 Days For Down Syndrome Awareness and Acceptance. 31 For 21! Thanks for stopping by!!!
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