Sunday, April 26, 2009

1:15PM Update - Sun.


Opening her mouth for the yucky medicine that helps her thrush.

Kate is doing about the same. Oxygen level still okay! We are waiting to see how her fluid output goes today. She is napping now and when she wakes up, I'm going to try to take her outside. There is a student nurse here today and she is able to help me. It's kind of a two-person job. :)

They are considering taking her wound vac out today--but haven't decided yet.

One concern is that she is barely eating. She tried to eat some egg this morning but gagged when she tried to swallow. She has not eaten any solid food since surgery -- other than an occasional goldfish cracker and a few bites of egg yesterday. The doctor is not sure if the gagging is from the thrush causing pain in her throat, or if there was some damage done from the vent tube. She has not had the vent tube in for a long time, though. At any rate...she is not eating enough. She eats less and less every day. They are having me write down everything she eats to try to count calories. If her non-eating trend continues, there will be no choice but to put her NG tube back in.

Chest tube fluid output yesterday:
59cc's

Other than that, we are doing well. Jeff leaves for Boston tomorrow and will be gone for four days. Please pray that Jeff's mom will get over her cold, and that Jeff's sister doesn't get sick.

Now for some Mama-bear venting. Taylor asked me last night if Zoey's surgery was going to be this intense. I told him no...that when Zoey has surgery, it should only be a few days in the hospital. He asked if Zoey's foot was going to be amputated, and I told him that we aren't sure yet, but it is looking very likely. He then said, "It's going to make it harder to stick up for her." I asked what he meant and he said, "Well, some of the kids in the neighborhood think that the little kids are freaks (because of their special needs). I try to stick up for them."

I felt like I had gotten punched in the stomach.

I am so sad that my kids are considered freaks by some people...and sad that my older kids are teased because they have 'freaky' siblings. *Sigh*

I read a news story recently about a TV News anchor who had some type of hand deformity and parents were calling the station wanting her removed from the air. They said her 'deformity' was scaring their kids!! That just floors me. When did it become so important to spare kids from the realities of life? What if one of those children gets in an accident and becomes 'deformed?' Will they then think their lives have lost all value?

I just don't get it and I never will.

PFK!