There's no place like home

Phil and Lily got home last night and it went fairly smoothly. Minimal throwing up, no tantrums, sleeping through the night. I was doing dishes last night and suddenly I hear Lily screaming, I run to the stairs and yell up to Phil. I can tell he is trying not to laugh when he says- she's fine. I hear Lily between sobs- I AM NOT FINE! There is milk on my HEAD and it's not FUNNY. I immediately knew what happened. He was putting her to bed, setting up the tube feeds and some of the pediasure squirted out of the tube. I go upstairs and sure enough- the side of her head is coated in the thick mixture, which when left to dry makes an awesome substitute for glue.

Today she had her treatment in clinic and has been doing really well. She even went to Maggie's house to play for a little while. It is probably just to cast doubt in my mind since I officially cancelled her preschool enrollment and gymnastics the other day. On the way home from treatment she asked if she could go to school tomorrow- I swear she is psychic- that or she sneaks and reads my emails when I'm not looking.

I did a bolus feed this afternoon- which is a quick amount of pediasure at a higher rate. The lengthy medium-high rate feedings weren't working- so Phil and I did some research and came up with a game plan and then after much ado had it cleared with the docs and dieticians. Really the issue is only when we are admitted to the hospital making sure it is noted that we are allowed to touch the feeding machine- otherwise we get "busted" tweaking the machines. She needs 900 mL a day to maintain her weight. The other night they wanted to run 90 mL an hour for 10 hours( sounds like an algebra problem gone very very wrong doesn't it?) We tried it, it didn't work. Much past 60, she pukes. We know this from previous experience. But the residents didn't get the memo, the intern had issue with the orders not being carried out and Phil had problems with Lily puking when they were both supposed to be sleeping. The intern ordered the nurse to turn it up while Phil was sleeping, she tried to stop it, long story short- Lily puking, Phil irate. I'm not sure at what point in the medical food chain they are allowed to think for themselves, but our friend issuing orders clearly had not reached that point. The onc doc had stated multiple times that she does not care how or when Lily gets the feedings, she just doesn't want her to lose any more weight. So we do nightly feeds at 45-60 mL an hour and then 3 boluses during the day- sort of mimicking meal time. So far so good today.

She decided she would like to type a message so here goes.....


eeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee33333333333333333333333333333 lllllllllllliiiiiiiiiiiiiiiiiiiiiiiiiiiiily dddddddddddddddddddddddddddddddddddaaaaaaad
kkkkkkkkkkkkkkkkkkkkkkkkm./aq

Kinda like when people let their kids do the voicemail message.

After tomorrow's treatment- we are halfway there. Where there is TBD.