VIP & a GJ

 

Two weeks ago, we had dinner at Tom's brother's house.

And they have a big man cave of a shed in the back yard.

And we were out there after dinner. Roasting marshmallows in the fire pit. Talking.

Bradley had just had his phenobarbital.

And he was still eating like he always does.

And he spit up a little.

I used to be annoyed when my kids would spit up. So messy, right?
But when Bradley spits up it scares the hell out of me.

Not because he chokes or anything.

But usually because it is followed by pneumonia.

 

 

He had just finished a round of antibiotics 5 days earlier.

Antibiotics to kill bacterias in his lungs causing pneumonia.

AND THEN he threw up.

So 5 days later, he was running a fever.

And I took him into the pulmonologist.

And I told him he had thrown up.

And the pulmonologist put him back on another 10 days of antibiotics.

And this time he ordered an x-ray.

 

 

And Tom took him down to Sunrise to have it done.

And Tom said his whole right lung looked white.

 

 

And I called the GI and told him to please schedule the placement of the GJ now.

That I was tired of Bradley having pneumonia.

That Bradley has been on oxygen since May and I'm tired.

And I will do anything to have him stop getting sick.

 

 

And the GI said it would be a few weeks till he was better

and I told the GI he's not going to get better unless he gets the GJ.

And the GI agreed.

And the next day the nurse called and scheduled it in 10 days.

 

 

And today, as a formality, I took Bradley out to the pulmonolgist to have him look at the x-ray

and tell us if he thinks Bradley does in fact have aspiration pneumonia.

And the pulmo took my disc and left the room when I saw him.

And a few minutes later he came back with a nurse

and told me to leave the kids with the nurse and come into his office.

 I walked down the hall into his office. I have never been in there before.

He had leather couches and a big mahogany desk.

Nice artwork on the walls and papers and stacks of books everywhere.

He motioned to me to come behind his desk and look on his computer.

And the upper right lobe of Bradley's lung was empty, but the bottom was VERY white.

And he said that normally you can see the heart through the lungs,

but that you couldn't see it at all in this image.

And so I said "Are you sure he has pneumonia then?"

And he said he was.

 

 

 And we went back to the exam room

and suddenly Maddy called to tell me she was home from school
and he told me to answer it.

And I made sure she was alright and I told her I'd be home soon.

And I hung up and the Dr said I had very good kids, as he was looking at Bradley and Charlotte.

I asked if he thought the secretions from the bronchscope looked like aspiration.

He said they did.

And he said,
for a kid who wasn't eating anything by mouth,
and who wasn't sick,

Bradley had a lot of junk in his lungs.

And I reminded him about the swallow study and he said it didn't matter.

And I told him I would go through with the GJ placement then.

And he said he would.

 

 

He said he would order a vibrating vest for Bradley to wear to help him clear his lungs.

He said they would come to my house to measure and fit Bradley for the vest.

That it was specialty made for kids who had pneumonia.

 

And I asked him how much longer Bradley could not eat by mouth.

And I asked if it would be for the rest of his life.

And he told me no.

That he should grow out of this someday. Eventually.

And I told him that I was getting pressure from speech therapy to feed Bradley by mouth.

And he said "He's got to get better first. For now, he is NPO."

Which means nothing per orem or oral.

 

And he bent over into Bradley's stroller and patted Bradley on the chest

and said that Bradley was a VIP.  

And Bradley smiled and shook his head back and forth.

 

 

And the placement is next Friday.

We have to have it placed by x-ray, under sedation, in the hospital, 

so that they are sure they get it into the jejunum.

 

I want so badly for this to work and solve our oxygen problem.
I'm hoping it does.