I often forget that I have a daughter with an extremely rare autoimmune disease/bleeding disorder.
I praise the Lord for this since it once was a Goliath of a thing before us. I forget that is until she gets a sickness. Even a cold or a virus causes her little body to start attacking itself.
I'll notice a day or two before she gets sick due to the small amount of bleeding under her skin. Then the bleeding increases and little spots of blood start to show up on her chest, stomach, legs, arms, face. She starts loosing her appetite.
As her platelets get destroyed by her own immune system, the risk of her bleeding from her nose, in her mouth, internally, or into her brain increases. A simple bump to the head could be all it takes and she's bleeding into her brain in which case it's too late. If she spontaneously bleeds form her nose, we may not be able to stop it and she could bleed out before we're able to administer proper treatment and for that treatment to take effect.
You know, its tricky, when people bring their sick kids around because when Ahavah gets sick its sometimes a week admission to the hospital, a $40,000-$100,000 hospital bill, and then the administering of a $2,000 blood transfusion or IVIG treatment that leaves her sick as if she just had chemotherapy simply from that little "virus" someone else's child was able to get over quickly. And that's the better case scenario then a major bleeding event or worse.
I don't plan on keeping my daughter in a bubble (obviously - you know our lifestyle), but I respect those parents who keep their kids at bay who are obviously very ill.
Anyways, I really praise the Lord for all He's done in us over the last few years. Everyone at her Oncology and Hematology clinic knows us by name and we have shared the gospel with them over and over and over.
So yes, I'm just writing my thoughts out as I await the most recent blood count of my little sick and blood speckled baby. I don't know whether to prepare for a 3 day to 1 week stay at the hospital, or a call to watch her through the proceeding nights to make sure there's no sign of internal or external bleeding.
In the meantime, a lubricated nose and bed rest next to a humidifier is what the doctor ordered to prevent any chances of bleeding until her count is known and increased.
Thanks for the prayer :)
Just got word her platelets are dangerously low 16,000. Fortunately they ARE above 10,000 which means we don't have to rush into the ER and get admitted with treatment/transfusion. However, she risks severe bleeding and if she even begins a nose bleed or bumps any part of her body, we'll need to go in right away. She's going to get her blood run every 2-3 days and is on restricted "bed rest" until her counts raise.