Rough night

Rough night with the bowel prep 🤢. They did bowel prep a little different this time and she was not pleased with their way at all. She threw up non stop all night even with Zofran and phenerghan. Bowel prep for her is always a mess, It never truly works the way it should. She kept crying last night saying can it just be Monday already. I want to feel better. I must say These kids are very strong and brave.

She met another patient yesterday who we have seen via fb but never met in person. Both girls are currently inpatient. The other patient can insert her own ng tube. Addyson said if she can do that I can totally do this. The way these kids help each other is amazing. It’s truly great to watch. While no one wishes this for their child…it helps to see the words of encouragement exchanged and the drive /determination they provide each other. The push to keep battling this craziness.

It’s 5am she just fell asleep and they should be taking her to pre-op at 530. Surgery should take a few hours and then we hope she can get some good rest this afternoon. We will keep everyone updated. Thank you all for the love and support. This has been a tough road with some life changing decisions. This decision was the hardest. She’s 7, you never know how much they truly understand but at the end of the day they have exhausted all options and there is no other option. She needs help. She needs a better plan. She needs a protocol that works. We are staying hopeful.

Thank you!

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