Thursday, February 9, 2017

When You Can't Fix It

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** I am sorry about the font. No matter how much I change it, it reverts back to this. **

When you become a parent you want to fix all that is wrong with your child. When they are sick, you want to make them feel better. When they hurt, you want to take the pain away. And when they are scared, you want to reassure them that there is nothing to be scared of. But, sometimes, that's just not possible. There are times you can't make them better or take the pain away, or are so scared that you can't reassure them 100%. That has been my life since November 19, 2016. 

Our oldest daughter turned 18 earlier in 2016 but remains living with us because she acknowledges that she cannot make it in the world alone right now. Plus, she's still finishing high school. She had been complaining of some common symptoms such as occasional tiredness, nausea, etc but insisted that she was fine. On November 19th, my husband was shampooing our living room carpet when I realized that she was really weak and fatigued. I finally convinced her to go to the emergency room. She could barely stand while I was checking her in. Since the ER was slightly packed, their policy is to have blood work done before you're called back so the doctor can have the results ready. Not long after she came back from having her blood drawn, a nurse came to the waiting room with a wheel chair. They wheeled her to the back while trying to explain what the urgency was to us. The normal hemoglobin level for her age is between 12-15; hers was a 4. They explained that they were giving her 2 units of blood via transfusion. After some back and forth, we were then told that she was in kidney failure. The nephrologist came in and began explaining creatinine to us. A normal level is 0.57 - 1. Our daughter's was 32.5. They moved her to the ICU for careful observation. She also received another 2 units of blood. By the morning of November 21st, her creatinine had gone down to 26 on its own. The nephrologist told us that dialysis was the only option at this point. She went in for a permcath and began dialysis that evening. She had dialysis again on the 22nd and 23rd. They deemed her healthy enough to come home on the 23rd. At this point, she had to be on dialysis three times a week. 


Since being discharged, she has had another 3 day hospital stay for high potassium level, several ER visits, had her permcath reinserted, and had minor surgery to have a fistula done. She needs a kidney transplant. We are working on getting her on the list; the checklist is complicated. She still has dialysis 3 times a week, on the renal diet, and on a medication to help regulate the phosphorus in her body. 


My daughter is only 18 and has to fight harder than any 18 year old should. Now, to answer the most common question I get: How did this happen? Back when my daughter was around 7 years old, she was diagnosed with Henoch Schonlein Purpura (HSP). I wasn't told much about this condition when she was diagnosed; none of the doctors then had ever SEEN a case of it. We were briefly told that the condition could potentially attack her kidneys or other organs. She saw a pediatric nephrologist when she was younger and he gave her a clean bill of health. Unfortunately, a person's creatinine level is not something that would be checked at a typical well - visit. When we first moved to a new area a few years ago, I did take her in to the local children's ER for what turned out to be a kidney infection. Part of me wonders if that ER had checked her creatinine, would we have found out about her kidney disease in its earlier stages? I did a quick research on HSP and learned that only 5% of those diagnosed with it develop kidney disease and only 1% have kidney failure. 


My child is facing so much in her short life. And it devastates me that I can't fix it.  

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