Made of Gray

Emotional Denial

Holly D Gray13 Comments
Caleigh is feeling better. Eric and I have caught up on some sleep.

Reality is sinking in.
JANstandertpn
I'm emotionally exhausted. When we went into the ER last week and they ended up starting Caleigh on TPN, my thoughts were that this would only take a day or two to come off of it. The next day she had a central line placed. More permanent, but I told myself she would only need it for a little while. Denial.

On the way home from the hospital I was ok with TPN. You can't just be half hearted about such a thing. It's a life and death matter and going in only half way just doesn't cut it. So Eric and I talked and we decided we were 'in' whether we wanted to be or not. It's just TPN and we've done it before.....no biggie.

The quick acceptance of TPN and a central line was basically a good cover up for my complete denial of the impending necessary surgery. I had totally convinced myself that we could do what we are doing for a very very long time before having to do the surgery. I had that mentality until we went to our GI appointment yesterday. His thoughts are "why delay the inevitable" "why risk line infections and liver damage when the surgery could get Caleigh off the TPN again." He makes a good point. He was there, he knows just how sick Caleigh gets with surgery. She almost died. Her extremities were black. She bled out four times her volume during surgery. They turned the PICU into an OR. It was bad. He also understands our rational fear of another surgery and is ok with trying to get her feeds back up again, but he made it clear that he is for the surgery.

Basically I am totally traumatized. I guess I didn't realize how much Caleigh's 9 bowel surgeries have changed me. Ever since the first utter of re-stepping Caleigh's intestines I have had many nightmares of her dieing. I've been checking on her breathing more than normal. I'm a nervous wreck. I'm not handling her crying well. I'm scared to death about the whole thing. I think I've met my emotional quota here. Children shouldn't have to go through this and their parents should not have to stand by just to watch helplessly. The saying "Life isn't Fair" is an extreme understatement.

The surgery will have to happen, but just when is the question. I don't think Eric and I will be ready at any point, but maybe we will find enough peace to make the decision.

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The biopsies came back from the scopes and the allergy reaction that had shown up last time was gone. This means that the Elecare Caleigh has been on has helped. Basically she is allergic to food, but we already knew that. My hopes for tolerating real food is all gone now. Getting her to tolerate Elecare is the new priority. There was blunting of the villi which is usually connected to Celiac diesease, but the biopsy showed it to be non-specific which means that it probably isn't Celiac. Most likely damage from the bacterial overgrowth. Blunting or shortening of the villi isn't a good thing. To try and heal the villi this morning we started trophic feedings. Trophic means that we are basically just keeping the intestines open and working with a very small continuous feed. If you don't use it you lose it. Half pedialyte, Half Elecare at 5ml an hour. That's a teaspoon of formula an hour. It's nothing, but we will slowly go up from there.

So much has happened in the last week and each needs it's own post, but I'm not sure I will get to it all. So here's a small run down.....

Caleigh got her Wheelchair....

We went to the Eye Doctor....

We missed a Dentist appointment....

We talked to one of our surgeons on Thursday before he repaired Caleigh's central line.....

We go to see our other surgeon on February 10th....

We are over our head in paperwork......

Caleigh's playroom is almost done.....

We started a Listening Program......

We've decided to take a break from speech therapy......

Today Eric and I are going to relax at home with Caleigh. Enjoy the moments at home and try not to stress over the future.
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