Dehydration, hospital life, the journey

Thanks to all those who sent texts, called, checked in and visited. We appreciate it. Thanks mom and dad for keeping Ethen.

Thanks to our wonderful emergency department and 10south nurses. They are amazing as always. They always remember her and fight for her when they see her name pop up as being admitted. This stay the nurse has been amazing at advocating for Addyson. She said the plan the drs first gave wasn’t a real plan and she needed one so she could help Addyson reach it. I said I agreed.

The first time the team came in I had only had less than 2hrs of sleep and didn’t expect the plan they gave and was thrown off so I said ok to it but once they left and I talked it through we didn’t feel it was right. The nurse immediately agreed and paved the team back and said we needed a better plan. We did finally get one although it’s still not a perfect plan. We very well may still require more admissions for the same thing but we hope we won’t.

You would think every hospital stay would get easier but it doesn’t. People are always expecting a way to keep her out of having to go back for the same issue. Folks want a cure. We know there isn’t one. There is no set fix. Addyson has a bunch of different things going on (fever disorder, asthma, colonic dysmotility, seizures, auto inflammatory disorder, outlet dysfunction, and more). This admission was due to dehydration, an infection in her intestines and a low Bp. Addyson is a kid who looks amazing until she isn’t. It’s always a guessing game on when to take her in. Our team doesn’t even always agree. We as parents are left to make so many of these decisions. It’s hard. It’s tiring. It’s stressful.

Now we have to try to titrate Addysons meds back to a normal time schedule. All her med schedules got outta whack. Folks are used to one or two meds but these kids have more than one issue going on usually and require multiple meds so when they get thrown off it resets the whole med schedule.

This list is tough to read and it’s not even all of it.

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