Everyday that we have a "normal medical" day is a blessing to me. "Normal" for us is not what most would consider normal, but we do it. Day by day, in the grace of God, we walk the path he has laid before us. But these last few days have been harder than normal for me.
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I have been under a great deal of stress from outside sources that I can not control. I have been using my best anti stress techniques and clinging on by the tips of my fingernails, but for the last couple of days I feel over the edge!
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Simple things can throw Nathaniel for a HUGE health loop.
Really simple things....
Like a little blister on his little toe where his shoe rubbed.
Big trouble for my little guy :(
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With his Spina Bifida, the circulation to his feet is so poor that he has the hardest time healing from anything on his feet at all. A few years ago, a simple cut lead to 9 months in the wheel chair, 3 weeks in the hospital, 9 weeks with a PICC line (an semi permanent IV administering medication 24/7), and a recurring sore on his foot to this day. So when I say that somehow he has a blister on his toe it really IS a BIG deal around here.
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We have been cleaning the wound a couple times a day.
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He has been unable to wear his shoes and braces, which means he can not walk, yet he does not feel his feet so he can't understand why we won't let him walk. He has had to be back in his wheelchair, which is hell on all of us.
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And now his OCC has kicked in and he is obsessing on his toe LIKE CRAZY.
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Now throw into the mixture that as soon as there is infection in his body ANYWHERE he will get a UTI. Because we catheterize Nathaniel every two and half hours (yes that's right .... about 9 times per day we catheterize him!) it is pretty easy to tell when he has the beginning of a UTI.... and he has one now :( His poor body can't deal with ANY kind of infection AND still keep his bladder healthy, it's just too much for it.
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So now I have a little boy with a goobery toe, and a goobery bladder, and I get the great joy of heading back to the ER with him and explaining to the Dr on duty that it really is a big deal with my little guy! Oh fun! Hopefully it will be one that already knows us, and they can get us in and out of there without too much trouble.
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So if you are the praying type, please pray for my little guy.
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And me... I am over the top!
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And Audrey too.. since she gets a short fused mommy and a sick brother.
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Blessings!