Beanie's Blog: "I love homes."

Yesterday was such a whirlwind of craziness. I debated not even posting about going home, but it seemed so sure. Then they rounded on us at 10:30 and said she looks amazing, that she doesn't act like a sick kid and the only reason they were keeping us was hydration. They said that her fluid intake wasn't enough and that if we couldn't get her to drink half of her daily need by noon (16ish of the 33ounces) then we wouldn't go.

Dehydration is the number 1 reason kids get readmitted. And due to some of her medications it is vital that she drinks enough for lots of reasons, including to protect her kidneys.

It was brutal. Because we were pushing so hard she closed up and refused, she even broke down crying from exasperation, it was heart breaking. We tried dozens of different things to get her to drink. Dan finally made a game out of finding puzzle pieces and she earned "winning drinks" every time. That mixed with the sticker chart and we had 15 ounces down at 1pm.

The Fellow and Nurse Practitioner came to see us, saw our ridiculous games and our desperation, and then said they would check in with the Attending. I really didn't think we were getting out of there. But when Abby came back and said "You're free to go." I wanted to cry. Though oddly, I didn't. I didn't shed nearly as many tears as I thought I would through this whole ordeal.

After an emotional morning we were sent on our way and arrived home around 4. The nurse made a comment about how Selene would probably crash in the car since she had such a big day. I joked (more like spoke from experience) that she would last 50 minutes and fall asleep 10 minutes from home....she did. She chatted the whole way "I love homes! Going homes!" I don't know when she started adding an S to things.

Nana and Matthias brought Ainsley up and helped us unpack the car while Selene took her car nap.

When we finally brought her in it wasn't the reaction I expected. She was quiet and shy and sat on my lap for 15 minutes. But after that she clicked into happiness and she and Ainsley happily played the rest of the night.

We had soooooo much to unpack. I felt like we kept it simple, brought home stuff we didn't use (which I put away the week before) and somehow there were so many bags. But I was obsessed with getting it all put away. I totally regretted that decision when I could barely move at the end of the night but at least things were basically in order.

Selene didn't go to bed until 10. She fooled me into thinking she was down but then cried out for me and told me she wanted pizza. When you're worried about a kid who needs to eat and drink you give it to them. She devoured a half a slice of pizza and some water. At least her appetite isn't something to worry about. She's also quite excited about finally being able to eat fresh fruit that isn't a banana!

Today the Home Care nurse came to be sure we could flush her Broviac lines, something we do once a day. It seems daunting at the moment but I think it will be fine. And that should hopefully only be for a month or so.

After that I thought it would be brilliant to eat lunch outside in the sunny if not super windy day. Again Selene retreated into quiet, shy mode but finally realized the fresh air felt amazing!

At this point we are way behind where we want to be on ounces. As I sit here writing Dan is exhausting himself with every trick in the book trying to get 12 ounces of milk into her (we have only 12 ounces down from this morning). If we hit 25oz a day I feel like we will hover above the dehydration danger zone. But I'd be happier with 30 ounces.

Thank goodness Dan is off on Spring Break or else I'd be losing my mind. And most likely holding her down while syringing fluids into her. Even Ainsley is better at coaxing her into drinking than I am.

**Final total was 25 ounces. I got the last two ounces in by making her drink

before I would read the next page of our bedtime book. That's terrible, right?!