This hospital wing sounds like you will get sick by just breathing. Coughing, coughing everywhere.... as anresult of RSV patients surrounding us. Luckily, Liz has an ordered private room so that she isn't sharing space with another patient. She is not walking the halls or going to the play room and we put a mask on her when we make the quick dash to the garden for air and a chance for her to stretch her legs.
I have a couple handmade signs hanging around her room and this one, on her door, so that each and every person who enters will wash their hands before entering. I am a germ freak these days, and make no apologies as I will do anything to reduce risk of Liz getting an infection.
Speaking of the garden, today I was able to spend time with my big little babies out there. My parents brought my Kate and my Jackson to see me! Jax has cried each time he has seen me on Skype and at the mention of my name, so we knew it was especially important that I get time with he and Kate....and I loved every second of it. We were able to play a game while sitting in the sun and afterwards, raided the vending machines in the lobby. I miss being home as a family more than I can express.
Liz is doing alright. It is strange how she is so sick, but ironically doesn't have many of he awful symptoms that other hospitalizations have brought.
She still has the NG tube in and her feeds, given from 10:00pm-4:00am will continue tonight, and actually have been increased in calories. She is now taking in 800 calories through the NG tube feeding.
We are waiting for her to begin gaining some weight. Impatiently waiting.
The docs are using her intake/weight/calorie counts to determine what category she falls in to as the reason she is not gaining and malnourished. Here is a weak attempt at repeating what the GI explained to me:
Category 1- someone who does not gain weight because he is anorexic; either by choosing not to eat, not having an appetite, or because anatomically eating is difficult.
Category 2- someone who does not gain wait because of a metabolic/absorption issue. Food goes in, but does not get used correctly. Like a gas tank with a hole in it. You fill the body with food, but calories are not being used.
Category 3- someone who does not gain weight because she has a primary illness or disease that prevents or effects weight gain and absorption.
Liz is either a 2 or a 3. Determing which she is will decide how she will be treated (G tube, TPN, neither...).
So, the Nutrition Team counts and counts her calories, 800 count tube feeds are being given, an appetite stimulant is at work, and we encourage her to keep eating by mouth.... and we wait and pray that the scale each morning will show a gain.
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