I must be overly tired because I'm now irritated by a phrase I hear all the time here in the hospital. What phrase you ask?
"But he looks so good."
Some history: We're in the hospital. (First hint that he's sick.) So something must be up. And just because a kid doesn't look like they're dying doesn't mean they feel well. Some kids have learned to compensate. Manny feels badly ALL.THE.TIME so he just learns how to pick up and go on. Just because he doesn't "mope around", doesn't mean he's not sick. It just means his will to live each day to the fullest is stronger!
Secondly, I'm only irritated by this phrase being uttered by medical professionals. I know that if a friend says "He is looking good" that means they think he is cute or that they think he looks better for what he is going through or a whole bunch of other positive things. That scenario doesn't bother me.
It's when a nurse or tech or therapist says it. They basically are saying, "Why is he here? He looks too good." And then I realize, they must deal with kids who are rarely sick so they haven't learned how to "BE" sick all the time like Manny. Or their other kids must not have the largest survivor spirit in the world like Manny. Or maybe their parents pay special attention to them when they're sick.
But Manny? He just deals with the new symptom like a pro and moves on. NOTHING holds him down.
So when they see Manny, they should be impressed with the strength of his mind and his ability to hold things (like attitude) together when his body is falling apart.
And I'll give you the extent to how strong his mind is. Remember back in February when he was in the hospital and they were about to remove his gallbladder? 5 minutes before surgery, the Surgeon came in and said that he was acting too well to have a bad gallbladder. He was not acting sick. He was not guarding, not tender, not acting like he was in pain, etc. They decided to do the surgery anyway.
This is what he looked like about 5-10 minutes before surgery
And after the surgery, the surgeon came in and asked to speak to me in private. He was visibly moved. He said he couldn't believe how sweet, and kind and healthy Manny looked to have SUCH a sick gallbladder. The thing was gangrene and nectotic and had begun to rupture.
My point? You CANNOT go by what Manny looks like. This kid has heart. He is a survivor. He is not a whiner or complainer.
Shouldn't medical professionals know about this? Seriously.
Now about you friends, you can feel free to say he looks good. Because he does!
This is what he looks like this morning.
As you can see, during the night he needed oxygen. And don't you love the heart shaped hypafix? I love nurses that go above and beyond in little ways to help out.
I knew he didn't feel well on Tuesday as he never wanted to get out of bed. I kept trying to get him up and in the wheelchair. He didn't want to play ipad, just lay still. He was coughing SOOOO hard that he got hoarse. Unfortunately, it's not the kind of cough one needs to keep their lungs from getting pneumonia. He couldn't clear his throat. It was just below where suctioning could get to.
By last night he was just plain exhausted. I knew he needed oxygen just for comfort and support. He didn't technically meet the criteria for oxygen though for a while. I know that the Doctors are working on trying to write the orders so he can get it when he needs it but the written orders were not specific enough to include some of the criteria that he WAS meeting. I talked to the nurse early in the night about MY goals for oxygen. My previous experience with oxygen being an "issue". And told her that if we hit my criteria but didn't feel he hit the Doc's orders, that I would appreciate her calling Doc just to clarify. She said that would not be necessary.
Manny was finally sleeping (mostly) peacefully by about 10:30 so I went to bed too. It only took a little while before she felt comfortable with the decision for oxygen. And after that, he slept decently.
This morning, he doesn't need the oxygen so we turned it off but he refuses to let me take off the canula. I think he understands how that helps him!
Now we're waiting for Doc and what the NEW criteria is he has to meet for discharge.
12:30, I asked Doc for our "Escape Plan" and he talked to me about learning how to tunnel out! LOL Then he compared our stay to a bunch of escaping from jail movies (Like Shawshank Redemption, Escape from Alcaltraz, etc.) I sadly think there are some parallels.
He said we can't even TALK discharge plans until he sounds completely clear and his xray shows it too. He said he gives respiratory illnesses "all due respect" with a kid like Manny. So ... looks like we're here a bit longer. (sigh) But I do agree with him, this is where we need to be. It helps to have someone monitoring him all night (I can do day easily) and I love having the Respiratory Therapists who come by every 4 hours to do his treatment without me having to even think about it. And if he were to take a turn for the worse, they have immediate access to better machines and better medicines than I have at home.
OK and you know how he started on antibiotics? And how he has a history of c-diff? And that is triggered by administration of c-diff? Well, it did. What does that entail? Well, for him at least, that means diapers that leak all over the bed every 30 minutes or so. Poor guy.
So in summary ... some things are better. Some things are worse.