My oldest was first diagnosed on January 24, 2013.
We first noticed her eye lids, feet, hands, stomach and thighs had swollen practically overnight. That same day I called her pediatrician, who is absolutely amazing and so helpful, and he told us to drive straight to his clinic and he’d squeeze us in right away.
First notice of swelling, hours before diagnosed.
My girl had never had blood drawn. It was new to us both. I took her back while my Hubs stayed with our almost 2-month-old baby girl in the waiting room.
I had to wrap my legs around my oldest’s legs, cross my arm over her body to hold down her shoulder, and held her opposite arm down with my other arm.
Then the scream-cry started.
The nurse poked her with the needle, had to move it around inside, and just started to draw blood before my girl moved and bumped the needle out. So they poked her again in the same spot to finish.
I was holding her down with, literally, all my strength and was starting to shake. She’s so strong.
At this point, Hubs and my baby girl were back there with us. The nurses said they still needed a bit more blood for tests. Hubs and I switched places, him with our oldest and me with our baby. They made me stay in the room we were in, while Hubs took our oldest to another room where they had to lay her down. As soon as they left, I let my tears run. It’s a horrible thing to completely contain my sweet girl while she’s stressing to get away.
Hubs said a heavier set woman laid behind our oldest girl and held down her body and arm, another nurse had her legs and a male nurse had her shoulder and the arm they were drawing blood from. Hubs was there for comfort. I’m sorta glad they didn’t let me go back on that one because I would’ve been crying just as hard as my girl.
Finally they were all done and gave our girl some stickers. I loved on her all the way to the car and was telling her how much of a big girl she was and how strong she is.
We got our little princess a large french fry from Steak-n-Shake and a Coke Icee, plus a Rapunzel pez.
Sad thing… On our way home, our oldest girl zonked out. When Hubs ran in to grab her prescriptions, she woke up from a nightmare yelling “Mama! Mama!”. I hate this for her!
Then we waited to hear back from our Doctor.
That whole day I did tons of research. Everything was pointing to this kidney disorder called Nephrotic Syndrome. The more I read, the more I knew there was a good chance she had it. An acquaintance, a Children’s Hospital Pediatrician, was kind enough to take our concerns and voice her opinion. She had said our daughter most likely had Nephrotic Syndrome before we got our call from our doctor. I was dreading the worst, but still hoping for something else. Something better.
That evening, our doctor called and I took the call outside. He cut right to the chase, our oldest girl has Nephrotic Syndrome. He put our order in to Children’s Hospital and told us to head down there right away to start treatment. I held myself together on the phone, but as soon as the call ended, I had to let it all out.
My worrying was right. My acquaintance doctor was right. Everything I’d read was happening to my baby girl. My sweet, innocent baby who wasn’t even 2-years yet. And she’s in the minority. This happens to 1 out of 10,000 children. Mostly happens to boys. Mostly happens to children between the ages of 2-6. Sure she’s just a week from her 2nd birthday, but it’s still not right. Something else I didn’t want to hear… There’s no known cause. There’s no way I can help prevent, or stop it from happening. My innocent baby girl… She has no idea.
We packed up as quickly as we could, notified both our families, and started our 4 hour drive to Children’s.
Getting to Children’s, we had to go through the ER because it was 7:00 at night. That means our girl had to have the same tests done that she’d just finished hours before that same day. And the IV, the worst part. The male nurse was terrible and poked her too many times. Our girl was so stressed out and worn out from constant crying from all the pain that she literally couldn’t fight or cry anymore as they finished putting in her IV. We were not happy parents. She can only go through so much in one day.
Finally at midnight, we were in our hospital room. Nurses came in automatically for vitals, and kept up every 30 minutes. Our girl was so sick of seeing strangers who came at her with needles, that anytime the door opened, she cried. Nurses started having me take her vitals while they stood by the door. It helped enough. I also gave her medicines, both through her IV and orally. Anything to ease her nerves.
First full day in the hospital. Brenae with her baby sister Braeley.
My heart broke so many times that day. I didn’t know that was possible. Even typing this story now, I’m tearing up remembering everything my baby had to go through. To see my baby so confused and terrified of everyone is never easy. I comforted her in any way. Thankfully, we have such an amazing family and support system, our girl was quickly surrounded my more loved ones than nurses and doctors.
By the first day, our girl was better. She knew that the nurses would stay away and her Mama would take care of her medications and vital checks. She was walking around with her IV and even shared some smiles. Her body quickly accepted the medications and she was on her way to recovering.
Some beautiful smiles and getting around again.
IV is gone and she’s ready to play!
She was on a high dose of steroids and diuretics, plus a very strict fluid restriction. We had to learn exactly what she could and could not eat. With Children’s planned low-sodium menu and pamphlets, it was quite easy to catch on. The difficulty was Brenae’s thirst. She was first only allowed 350 mL a day (that’s about a cup and a half). That was another heartbreak, she was begging for a drink constantly. We had to take her mind off her thirst.
Two nights at Children’s was all she needed. We got out of there with more than we came with… Materials to test her protein, medicines, pamphlets, and a milliliter measuring cup. Once we were home, we quickly unpacked, restocked low-sodium groceries, and I got to reading more about this disorder.
At home and taking it easy, while looking pretty in pink.
Our oldest girl has been diagnosed with Nephrotic Syndrome, Minimal Change Disorder. She has since relapsed three times and continues to push through. I’ll be posting and catching up on all her stories as quickly as I can. As well as posting recipes that my toddler has liked and some recipes that help with fluid restrictions.
Here we go!…
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