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:

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.



Anonymous said...

Just wanted to say I am praying for Kate. I have been checking your blog often as we sent LOI for a little one needing the Fontan as well. I am sorry about the kids teasing your son. I think I know the story about the news anchor as well. It is a shame there is so much emphasis on appearances.

James, Dawn and Family said...

I'm floored and really sadened by these comments. What a sad world we live in when parents believe it's ok NOT to explain the importance of human life rather "perfection" on the outside.

Lori said...

Oh my stars. A flood of sadness just rushed over me when I read about the teasing. I really have no words...just shock. I know kids can be cruel but what are these parents teaching their children? **sigh**

PFK and your other children who are fearfully and wonderfully made. :)

Angie said...

Ahhh...just this morning our pastor preached on the topic "Life is Cheap." The premise being that society often sees lives as easily dismissed, destroyed, ridiculed, belittled, etc. We need to see ALL lives as created in the image of God, Gen. 1:27. I have no doubt that our boys will face these trials as our Laura grows. We can simply pray that our boys have the courage to stand up for her like your son does. PFK.

Meredith said...

I'll be praying for the home front as Jeff will be in Boston and his mom and sister will be on their own.

It saddens my heart that kids and adults still react to people with handicaps in such a harsh way! But way to go Taylor for sticking up for your siblings!!

We'll be praying that Kate eats and that she won't have to have the NG tube back in!!

Love you, Meredith

Cari Bacon said...

If only people knew the heart of God, then they would realize it's what's on the inside that counts! I am very conscientious about trying to teach this to my kids. I know exactly what you mean when you said "Mama Bear vent". I could feel my blood pressure rising as I read your post...ugh! My mom always told me growing up, "Don't ever make fun of someone physically or mentally, because you too could have been born that way!" That's always stuck with me. As I grew up, God has shown me how important it is to treat people with respect and love...His love.

My friend from church is in her mid 20s and has cerebral palsy, and we have talked about someday in heaven she'll be able to run and skip...something she has never ever done here on earth. What a day that will be when we receive our heavenly bodies perfect inside and out! :)