learning more ever day

Everything with dealing with JD's needs is a giant learning curve! Every day I learn something else as part of his care. In the beginning it was how to deal with his feeding tube. Then it was difference between the NG and the Dobhoff. How to work the feeding pumps. Move on the therapies. All wheelchairs work differently. And then PEG care. I could write my own manual by now.

Today... I learned how to change his PEG. I'm not going to say it was as easy and cut and dry as the doll they let me practice on.

Mic-key Button the day after surgery. 

The three surrounding buttons were removed after a month.

The part that says lock gets removed between feeding. The remaining part is the PEG. 

For one thing. The doll didn't move, cry and act as if he was being murdered by the shear thought of this happening to it. My son on the other hand. Well let's just say if there were other patients in the office, they might assumed that the surgeon was doing a major surgery without anesthesia in her exam rooms! That was all while the PA was simply putting a warm washcloth on his stomach to help with some of the mucus.

But after getting him calmed, I was able to do it. Let me just say, I'm proud of my own instincts to not feed him anywhere close to the time he was going. They never said anything to me about it prior to taking him in. But I had thought about it earlier. The child has a small hole in his stomach. This hole is blocked by the PEG. I am removing said PEG. That would imply.... well, I'm sure you get the idea.

After a little more care to the granulated tissue growing. Which brought on another episode of someone trying to murder him. (Now mind you, when mommy pulled out the old Mickey Button and put in the new one, he didn't cry. He whimpered. But never cried. A warm washcloth and a Q-tip with medicine, that is the END OF THE WORLD!)

On Tuesday, we had to go to his primary pediatrician. He had sounded a bit congested and his therapists and I were a bit concerned he was possibly developing a second case of pneumonia. So after our morning doctor's, we shuffled off to the doctors. After a few minutes listening, he asked if JD had a nebulizer at home. We didn't I told him. Well, we do now. He also sent JD for a chest x-ray. It's like the learning (and hits) keep coming.

JD named his puppy nebulizer "Jake." I think it gives him a sense of calm. We both got into it pretty easily. Another easy learning curve. I guess after being the full time nurse for so long, these things seem like nothing. Right?!

We also did get the results back that he did have another pneumonia in the same location as before. We know the last one had cleared, as the doctor had seen JD between these episodes, and noted it was gone. It's felt that he is aspirating. We just don't know what. He's already on a limited diet. So tomorrow is a family meeting on diets, and where do we go from here. JD can't keep getting sick. Something has to be going on.

And while he is on antibiotics for this, he's also to continue the nebulizer. I think the doctor feels that just maybe his lung capacity was a bit impacted, and those muscles are weaker as well. And this might be just what he needs to strengthen them. I sure hope so. I'm tired of the little man being sick.


Now, I honestly always felt being a mom was going to be that learning curve. But never did I imagine how much I would learn. These are things I never thought I'd have to know!