September 30, 2016

Standard

Maintenance Day 539: Friday Afternoon/Night:

We called the HOT unit this morning after seeing what Scarlett looked like when she woke up. Last night, she was down four pounds since last Thursday. She hadn’t eaten more than a nibble since at least Tuesday. She has been in the bathroom at least ten times a night and more during the day and wasn’t sleeping well the rest of the night. By the time they called back they had already decided that she would probably be admitted.

Scarlett’s tummy pain and diarrhea started all the way back on July 28. We have been trying many things but we always have to give each new idea a couple days or a week to work. So eight weeks went by in no time. But we have been at the end of our ropes for a few weeks now.

Scarlett’s pain is real and it is severe. She can point exactly where it is. Her diarrhea is severe and constant. When we came in, they immediately took a blood culture from her port and started her on a bolus of fluid to treat her dehydration. After a physical and a lot of questions, we went upstairs to be admitted. As soon as we got upstairs she was called for her X-rays.

She was so brave. She had to be alone in the X-ray room. She had to do two standing and one lying down. She looked so tiny and fragile. It was a vivid reminder of the night she was diagnosed. I watched the images come up. I am educated enough to have seen some things but not enough to know what they were. So we will have to wait until rounds tomorrow.

She also needed to give a urine sample and a stool sample. She is such an amazing girl that she accomplished this on the first try with no cross contamination! (Something small and gross but I can be proud anyways). She told me “I just don’t have any more food in me” and then “I like just one hat better”. She is so smart and sweet and knows way more than she should.

Tomorrow will bring an ultrasound, more labs and an infusion of IVIG. She is neutrapenic with an ANC of only 300. We have discussed placing an NG tube (nasogastric tube – in the nose and down to the stomach) but we aren’t sure how much her tummy can handle. We also discussed extending the NG tube into the intestines or starting TPN. Until we figure out what is causing the pain, we can’t make a decision.

Scarlett’s urine came back good so far. No cultures yet but everything else looks good.

I was hoping that this would be a quick overnight with an NG placement, teach us what to do and go home. We can never get that lucky.

Tomorrow is our beloved Snowdrop Courage Over Cancer. This group of people is so important to us. They are the first people we met who had been through this. They have been our rock and our go to for questions. We love them so much and they have all become family to us. This is our one chance a year to see most or all of them together. To give and get hugs and see that kids grow up, get better, and keep living life. It’s where Scarlett met Isaac and Teo and Nathan and Cole and we met the parents of Jake and Harrison and Lilly. The year that I needed them most, we won’t be there. We will miss them all terribly and will fight like crazy to be there next year. We are sending all of our love your way tomorrow!

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