family, friends, and pulmonology

We made another trip to SD today. We stopped by Auntie Sarah's house to feed Maryam, drop off her refrigerated medicines, and set up Maryam's Port-a-crib. After that we headed down to SD to see nurse Jen and her family. We ate some good dinner and then rocked out to Guitar Hero. Her son Jake kicked my butt! Maryam sat on the floor dancing to the music, she was rockin' out, it was hysterical. She tried stealing Jake's remote to help Mommy out, but, he still stomped me.

After rocking out to Guitar Hero we went to meet Maryam's Pediatric Pulmonologist. He was SUPER nice and very informative. He has a plan! I LOVE plans! He thinks the reason her lungs haven't been improving the way they're supposed to is because she's not getting enough of the inhaled steroid. So, he changed steroids and delivery. Instead of a nebulized steroid, the Pulmicort, she's getting an inhaled steroid using an aero chamber.

First we're going to change the steroid and delivery of said steroid. Next we're going to take her off of Lasix and then ween her off the rest of the diuretics. After she's off of the diuretics, he's going to ween her off of the oxygen. Its going to be at least another 3 months. But like I said, I LOVE plans!

The RT, Ellen which was one of Maryam's RT's in the NICU, turned the O2 off and tested her on room air. She stayed sating at 95% which is GREAT for Maryam! She just sat there playing and trying to get the pulse ox off of her toe.

The doctor also wants Maryam's GI to refer her to a pediatric nutritionist. He wants to make sure Maryam is getting the right amount of calories per day and per feeding. Also, he wants to have her taken off of the reflux medicines that she probably doesn't need anymore. I think that would be great! I've been asking about this since July. First she was taken off of them after the fundo surgery, then she was put back on them when she was having complications after the fundo. She's been on them ever since. But if she doesn't need them, then I don't want to give them to her anymore.

Tomorrow we're back to Palm Springs for OT. Then we're coming back to Lake Elsinore to babysit Charlie. Thursday we're going to Fontana for the GI apt and then back to Palm Springs for OT. My goodness, we drive A LOT!