Outside getting some good ol’ vitamin D in a pretty dress (thanks Adrienne!)

Eating a little chicken & rice.

Hi all – Sally went from drinking a couple ounces to drinking none all day today while I was with her and Nicole was at work. In the morning, one of the doctors wanted to send her home. At this point she was not drinking fluids, not eating, and throwing up her medication and were already told by our Leukemia team that they thought it’d be a good idea to keep her in til at least Sunday. So, I got a bit short with him and told him to talk to our Leukemia team after he got a bit condescending with me. We’ve been having ongoing battles with the current crop of attending doctors on floor rotation the last three weeks, and are pretty much over them even though some are about to move off anyway. Its frustrating to deal with staff who don’t know Sally and her history, come in right in the middle of things and try to make an informed decision based off current data without the whole story. The only valuable thing he said was that there is a backpack version of an IV machine that they can send kids home with. More on that in a second.

We experimented with trying to get Sally to eat all day. We tried different medications, different ways of giving her milk, let her sleep as much as she wanted, tried tiring her out. They even let me bring her outside for a bit to get some sunlight and fresh air, hoping that would make her thirsty. Nope. We got back and before hooking her up to the IV, I put her in the stroller and gave her a cookie, which she enjoyed while doing laps on the floor. She ate it, which showed us she isn’t having an oral pain issue. Last cycle when first giving her oral meds, she went on a milk strike and refused to eat. Nicole thinks she’s doing that again due to us switching meds from oral to IV the last few days.We did manage to get meds into her orally, even though she was gagging while doing it.

We asked our primary nurse (who spent the day doing all of the above experimenting with me) about the backpack IV system. After discussing it and weighing the pros and cons, we decided that as long as Sally’s vitals remained good, and she continues to keep her oral meds down, we could bring her home. She would remain on fluids via this backpack system that we’d have to monitor until bringing her back in for her checkup on Tuesday. Our hope is that being home will trigger a desire to eat and by Tuesday they can remove it. The decision was pretty easy after talking it out, amazing how simple that was with our nurse who understands Sally and her history. There’s a couple doctors who could use a little lesson in patient care from their nurses.

So we’ll see, hopefully things look good tomorrow and our 3 week stay at MSK will be over. Nicole and I are both getting a bit fried (and obviously short) being two ships passing in the night, not seeing the boys, and constantly re-explaining Sally to the residents and doctors who keep cycling through. It’s been an exhausting 3 weeks both mentally and physically and we’re ready to move onto the next chapter of her treatment.

Please keep Sally in your thoughts and prayers.

Matt

www.facebook.com/sweetsallysunshine