Tuesday, April 22, 2008

Hey..Did You Hear That Pin Drop?

Did you hear that loud swoosh noise as all the air was expelled from holding my breath?

Daniel had a modified barium swallow test on Monday. He aspirated. Enough said? They stopped the test after that. Took a whole 10 minutes. And without attempting, or asking or inquiring about his history.
G-Tube recommendation.
You would think with the thinks that are "wrong" with Daniel, we would be more use to hearing these types of things. No matter how many times someone tells you something is wrong or needs to happen.......the wind get knocked out of you.
First let me say I am NOT in denial that Daniel has medical issues. I am well aware of that. More than I want to be, and I'm sure we aren't done hearing of things that will come up.
Yes I know Daniel has feeding issues. Yes I know that part of the CBPP (brain malformation) that he has, it is known that children have swallowing problems. Last year, if they would have told me.....g-tube, I think I would have probably been more on their side of the fence. But he has gotten so much better, he doesn't choke on his saliva anymore. I don't have to do emergency pull overs on the highway to grab him out of his car seat and beat on his back. We haven't had to do that in over a year. He obviously has issues or he wouldn't have been going to occupational therapy for the past two years. But his eating has gotten better. Did I know in the back of my head that yeah probably sometime in the future we'd have to figure out ways to add more calories because he wasn't able to eat the big things.
But listen, the recommendation for a feeding tube is not because of "failure to thrive" it is because of "high probability of aspiration".
Although Daniel hasn't gained too much weight in that last nine months he has maintained between 26-30 lbs and he is 37 in' tall. that isn't a feather weight for his age and his condition.....he is holding his own.

He also has never had pneumonia, he has never had any type of lung infections, or bacterial issues with anything......
I would be more than welcoming of a g-tube if I felt that Daniel was at high risk. He hasn't been sick in 2 1/2 years, he is probably one of the healthiest kids around. He is rarely, if ever sick. Considering that he is constantly around other children with weak immune systems because of their conditions......he's chances of getting sick are higher than normal.........and he hasn't.

We will wait to talk to the doctor to hear his recommendation, but until someone can tell me that it is in Daniel's best interest to be 100% tube feed....then its not going to happen anytime soon. Yes I understand that in the future it will probably be needed....and at that time I will do what is best for Daniel. Don't get me wrong, I understand g-tubes and they are life savers for many children. But just not Daniel at this time.

But I am going with my gut instinct here, and it is screaming.......NOT YET! when he falls off his weight curve on the growth chart that he is currently on and/or he starts choking, or aspirating, gurgling, whatever you want to call it....then we will get one. We will continue to feed him his Resource for Children high calorie formula, and feeding him baby food that is slightly thickened to apple sauce consistency, with the added Duo-Cal to get in more calories.

I'm still waiting to catch my breath......this was the last thing I expected to hear.

On a good note for the week.....Daniel is one of the Miracle Child stories for the Children's Miracle Network. They are doing a radio-thon on May 8th to fund raise for monies to go to the children's pediatric rehabilitation at beaumont hospital.
So we had to drive to the radio station that is hosting it (WDVD 96.3)and do our interview with Blaine, Lisa and Allyson. Thank goodness it wasn't a "live" interview. They were recording it and they can edit and put to music. Hopefully I don't sound too stupid and studdering all over the place from nerves! I guess we'll all find out on the 8th! Listen to the station and pledge!!

1 comment:

C said...

Good for you for going with your gut. Q aspirated a little water in speech yesterday and I haven't yet recovered from the realization that he's probably doing it a lot more than I thought, based on the therapists' statements.

Hang in there, Melanie. And go, Daniel.

I'm glad that if we have to be in these here trenches, we're in it together.