It's been 141 days since Roe's type 1 diabetes diagnosis. She's had approximately 850+ shots of insulin to stay alive and probably close to 1,200 finger pricks to this date.
T1D is a daily challenge when everything is going well. The amount of food planning, carb counting and math calculations done on a good day is endless. Then, life throws you a so called "normal" curve ball (like for anyone who has kids). This curve ball is in the form of illness not related to T1D. And it's the first time being sick since her diagnosis with T1D. This is a whole new ball game, and it is extremely complicated and scary and not anything like you can imagine...unless you've walked in these shoes.
It feels like being thrown out in the ocean to surf....except you've never had a surf lesson, and it's the middle of hurricane season so the waves are skyscrapers, unpredictable, and you are just trying to prevent yourself from drowning...except your 8 year old's life depends on you, and you have suddenly become the unexperienced expert, learning as you go...
Type 1 diabetics cannot live without insulin. When they get sick and cannot hold anything down, not only are they at risk for the obvious...severe dehydration...but their body kicks into over drive and can almost immediately start producing ketones...this ultimately will lead to diabetic ketoacidosis, coma and death without medical attention.
Last night when I recognized Roe was on her way to diabetic ketoacidosis, I drove her into the local ER last night with the guidance of one of the doctor's down in Children's where she is under care for the management of her T1D.
With all due respect to any ER docs/nurses etc reading this or anyone in the medical field for that matter, I know you see everything under the sun and have to become "experts" yourself as each case presents itself...but, it is extremely nerve wracking to go in as the T1D Mom expert who does not work in the medical field and have to be able to ask the questions of what they need to do to reverse the dka, stop the vomiting and get her back onto her diabetes management plan because she can't live without her insulin.
It's been 141 days since her diagnosis and last night was her first time being sick...horribly, gut wrenching, non stop vomiting ill....and I had to be the advocate/expert to make sure my local ER knew what the f*** they were doing. We didn't have time to go all the way down to Children's in Boston...she needed attention immediately. And so the surfing began...
I may or may not have initially offended a doc or nurse in there, but so be it. For some reason, I cannot explain...I have been given this beautifully strong little girl who has a chronic disease that HAS NO CURE (insulin is not a cure, it's a crutch to live). I have to advocate and protect her and show her how to advocate and care for her disease.
At the tender young age of 8, she needs to recognize when her body is in trouble. She has to carb count, food pair and even sometimes, give herself her own injections. She will never be as free as a bird like she was before T1D. She does not get a break.
Nor do I....
So yes, I will roar my mama bear roar...and maybe piss off some ignorant or insensitive people on occasion. I will ask questions of people who are treating her...because they don't know it all. They are just surfing too but with the medical degree.
I am happy to report as I type this up that we are home now. Roe is on meds for a pretty bad infection...but she's on the mend. My heart broke just a little bit more last night, but this time, I hope it doesn't mend because I need the fuel to continue to figure out what I want to do with this life of mine. My heart calls to all the T1D children out there and the parents who haven't really slept in ages either...but I don't know what to do just yet. And so, I'll take this broken heart and hop on that surf board and see where it takes me.....
No comments:
Post a Comment