Wednesday, November 16, 2011

November 16, 2011 - Day 46

5 months, 1 week, 4 days since diagnosis
55 days away from home
day #1 of current hospital stay

The last 24 hours have been tough. It started with discharge in the late afternoon yesterday. Then a fearful night's stay alone with Riker in a strange place. Finally ending with being re-admitted to the hospital after a scheduled clinic visit the next morning. Fantastic.

Our stay at the Ronald McDonald House was not easy. I have to prepare and give meds every few hours. I have to hang feeds and take them down every few hours. I'm always cleaning, mixing, or preparing feeds or meds. Riker has almost a dozen different meds at varying times and amounts. And they're not cheap. Some of the meds are only good for 14 days, too. All the time, she is constantly crying. Sometimes she's sleeping but it feels like mostly she's crying. It's even more exhasting than coming home with a newborn.

So here I am - alone and scared. Every little thing has me in a panic. Should I call? Is this ok? Am I doing this right? I've never mixed formula before - you'd think it'd be a no brainer - except I didn't have anything to measure the formula in or store it in. For some reason, I'm suppose to mix about 16-20 oz at once and store it in the fridge. In what? Well, we didn't think of that. I went to the main house and all they had was glad disposable tupperware. I suppose I could mix the formula in that. Odd...

I finally did find a gallon pitcher to store the formula in. Except when I shook it EXPLODED with a long bang all over the kitchen. ugh...

Then to top everything off, Riker threw up her 8pm feed at 11pm. I was just hanging her next feed and she started to throw up in her sleep. And really throw up at that. She hasn't thrown up in months. It was a lot, too. I think it was her whole feed. Do I call? Why didn't she digest any of that last feed over 3 hours? No, it will be ok... we have a clinic visit in the morning. Is her G-tube looking redder? Is it infected? It'll be ok... we have a clinic visit in the morning.

In the end, it was fine. We were readmitted because Riker's electrolites were off. Everything else is fine. Her sodium is down and her potassium is up. She essentially needs more salt in her diet. If her levels drop too far or too fast, they can cause seizures. So they just wanted her to be observed while they trouble shoot the problem. In an older patient, they'd just tell them to go home and eat some potato chips. So... it's pretty much just a very long day and a harmless pain in the ass.

And, unfortunately, this still does not explain what is wrong with my baby.

Jon and Valentine were already on the way so they're here now. Needless to say, the change in plans was quite disappointing to them. However, I'm trying to soak up the time with them. Looking on the bright side, it would be harder to do so if I was constantly drawing up meds with Riker screaming in the background. And it's always difficult having Valentine outside of her routine. Getting her to sleep in a strange place is close to impossible. I hate having to discipline or fight with her in the short time we have together.

Hopefully, Riker will be discharged again tomorrow. Hopefully, we'll have a short time to enjoy being a family again before the other half heads back to Maine.

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