October 13, 2016


Maintenance Day 552: Under One Roof

This week has been very fast moving. On Monday, Scarlett was doing very well. So well, in fact, that we tried to decrease her IV fluids and increase her oral intake. On Tuesday, we started planning for discharge! She improved so much so quickly. Tuesday her TPN went down to 50%, Wednesday down to 25% and today, nothing.

This morning, her stool was tested for cryptosporidium and it was NEGATIVE! She will have one more day of her medication and she will be done! Hopefully, her diarrhea will resolve over the next week or two since she finished all of her other antibiotics tonight. At 6:00 tonight, our princess was discharged! She is now home and happy and playing with her sister.

Tomorrow, Scarlett will have two more doses of Alinia. She will start a probiotic for a week. She has a note that she can go back to school but we will see how she feels when the time comes. It will take about a week to get her back on schedule, willing to sleep by herself, and eating normal food again. We also have to deal with the unknown questions. How will she do going potty by herself? Can she sleep through the night without going potty? Will she have accidents? What will her first “real poop” be like? 😬 Coming home is sometimes as exhausting as being in the hospital.

In addition to that, we have her regular monthly appointment next week where will restart her chemo. It looks like she will get the IVIG at her last few appointments. The plan is to start her chemo at 25% of her previous dose. We don’t know how she will react to restarting the methotrexate. Please, God, don’t let her start with the diarrhea again!

On Wednesday, Evangeline awoke very crabby. Right before I left for work, she told me that her head hurt and the only thing to help it was to go to sleep. After school, she still had a very bad headache, threw up in the car and fell asleep for three hours. So next week she has an appointment to discuss migraines. We seriously can’t win. But for tonight we count our blessings and count our three babies asleep in their beds under one roof. Life is good!

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