Living with Dialysis

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Today is a good day because we’ve ended the 2 ½ hr journey to Nemours 3 times per week for Saniyah’s dialysis. Wrapping up with her haemodialysis last week, yesterdays session was using peritoneal dialysis. Everything looked good and we were given the green light to go home with the new machine. While we are excited not to make the long journey throughout the week, we are still apprehensive because we have been down this road before... A few months ago when we were finally able to bring Saniyah home, we we trained on the using the dialysis machine and how to provide in home care. During this trial period, we learned the signs to look for and based on what we saw. Sunken eyes or severe cramping meant the machine was pulling too much fluid so we would have to use a lower glucose solution like a 1.5%, while puffiness on the face and body meant we weren’t pulling enough fluid so we had to raise the solution to a 2.5% mixture. It was all a fine balancing act.

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We had been told about peritonitis in one of the many training overviews and they talked about how bad of infection it was, but nothing had prepared us for actually dealing with it. We had put Saniyah down for bed as normal and she said her tummy was hurting, but we told her it would be okay. Perhaps an hour or so later, she woke up crying in pain and saying her tummy hurt. As Arline rocked and cradled her, we both noticed the discharge bag was slightly cloudy so we we knew to contact the hospital. We also knew that meant another 2 ½ hour drive.

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Fifteen minutes into the drive and Saniyah is crying and screaming in pain after each bump in the road moves her body. Around midnight we arrive at the hospital and get checked in and they immediately draw fluid to look at her discharge. The fluid now looks like thick cloudy lemonade. They immediately begin giving antibiotics to fight the infection. Amazed at how it has changed in such a short period of time, the doctor on call began to explain the severity of the infection. “Let me put it this way” she said “Imagine a woman with a real bad yeast infection (yeah, I had no idea what she was talking about), this is 10x worse than that.”

After a few days in the hospital getting the infection under control, we were released and allowed to return home, this time armed with antibiotics and a small prep kit just in case we had to do this again….two months later, we had to do it again, this time we were ready.

  • Joyce Griffin Bell

    on October 1, 2014

    Keep sharing the family's journey. You are helping many. My prayers are daily for our princess and for the family. God bless and keep each of you as you care for Niyah!

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