Saturday, March 14, 2009

All about the numbers

On Friday we were once again at Children's in DC.

The numbers we are watching - Brayden's weight. More calories in less time.

Brayden's weight remains that same. Not losing, not gaining. He obviously needs to gain weight. Thankfully no one (yet) has mentioned that lovely "failure to thrive" label. Seriously doctors...that label is terrible.

Over the past few months Brayden has been hooked up to his feeding pump for about 20 hours a day. 20 hours is not fun. It makes his life a little bit more difficult. To be hooked up to a machine for 20 hours, how could that be fun? The pump gives him 46 ml per hour. That is only 1.5 ounces per hour. And that is slow.
We have decorated his feeding contraption to add a little excitement. Some fun tinsel...Brayden likes the shiny. A little animal that plays music...Brayden likes the music.

Back to Children's; we meet with the nurse practitioner in the GI department. She handles only special needs patients. We will be seeing her for maintenance with Brayden's G-J tube. She is in full communication with Brayden's GI doctor. Their plan is to have Brayden increase his calories and the same time decrease the time for him to be hooked up to the feeding pump. We will be making his formula a bit more concentrated and increasing the flow per hour.

Brayden will be doing some quick weigh-ins with his pediatrician, showing weight gain and hopefully tolerating the increasing. Over the next little bit we are going to be working from 20 hours to 16 hours. If Brayden handles this well then we could move to 14 hours! That feels life changing. The less time he is hooked up the better.

The GI team does not consider Brayden to be out of the woods with the vomiting (a distant memory for us at this point). It has been over 4 months since the vomiting stopped. They want him to gain weight and do well with the increasing of calories and flow rate before we are able to even consider giving him food of any kind in his tummy/by mouth.

The doctor did give us permission to give Brayden tastes of food. Once a day for almost two weeks Brayden has had 2 tablespoons of baby food; sweet potatoes, squash and pears. And oh is he loving it. Amazingly he is handling the spoon pretty well...a far cry from where he was a year ago and not having anything in his mouth other than a toothbrush for 8+ months.

Oh how I wish we could feed him more. One of these days...


the deKorne family said...

Thanks for the update. That is an exciting step-we will be praying so much for him. How much does he weigh?? He is so precious...can't wait to see him in person!

Mary said...

Hi! My daughter Kate, had Ponto Cerebellar Hypoplasia Type IV. I googled PCH blogs, and your blog is one that came up. Your little boy is beautiful, his hair is gorgeous. Its so nice to find a family who is in a similar situation. I love your attitude and honesty. I'll continue to check up on your family. I have a blog as well.

nate and liz said...

Thanks for letting us know how we can pray! He is precious and a blessing to our family.