Thursday, September 18, 2014

GI and Supine

Check in time with Brayden's GI doctor.  Brayden has been with this doctor for many years, through some rough years and big GI troubles.  Today was more of a check-up, several things to check in to.

First, I needed to convince Brayden he was going to be fine and this doctor was not a special place of took him a while to believe me.

Second, we talked with the doctor about several things.
  • Weight gain - since the winter, Brayden has gained almost 18 pounds.  That seems to be too much, too fast.  Brayden is busting out of his pants (had to look at husky sizes) and even busting out of his wheelchair.  So he suggested we look at Brayden's thyroid.  Start with blood work.
  • Nutrition - Brayden's weight gain is huge for only getting 875 calories a day.  We are trying to find a special nutritionist through Children's that can help.
  • Bowel movements - you cannot come to this blog without knowing poop is always a topic of discussion in our house...part of having all boys and having to watch Brayden's output.  Brayden has NOT been having bowel movements on his own for several months.  Big doses of Miralax and needed enema for him to go.  The problem is, his bowel movements are always very liquid.  His body does not seem to know if/how/when he should poop.  So we are looking into another medication to hopefully stimulate bowel movements.
  • G-tube - his Mic-key button for his g-tube has been bleeding and causing problems.  His j-tube has been looking fine.  We will try a bigger size, ordering a new one with our medical supplies and will try it out next week.
The next day we are headed to Children's to meet with neuro and have labs done, incorporating all of the things mentioned above.

After the appointment, I dropped Brayden off at school.  I have been hearing that he has done well in a different stander this year.  They loaded him up in a Supine Stander.
This stander starts him on his back, the one he has been using in the years past he was loaded on his stomach (he hates being on his stomach).  Starting him on his back, starts with him being much more comfortable.  They strapped him down and cranked him to an almost standing position.
I do love to see him in the stander, standing so tall and handling it so well (and sooo much better than the other stander).

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