Wednesday, July 31, 2013

Recent Events

For about a week after Levi's Nexium dose was doubled, the breathing issues improved drastically and the vomiting stopped.  Since we had just started Pulmicort treatments through the nebulizer, I decided to stop these so we would know if the breathing problems had been caused by extreme reflux or not.  After a week, both the breathing and vomiting issues returned.  We restarted Pulmicort two weeks ago, and so far it has had no effect.  Thankfully, his oxygen has maintained in the mid to high 90's.

We saw our GI doctor yesterday concerning the vomiting.  I haven't been able to get all of his feeds into him since he started vomiting weeks ago.  I've tried many different feeding schedules, but he just doesn't seem to be able to handle the volume he's supposed to have.  He's even throwing up near the end of his overnight feeds, which are given at a very slow rate.  So, I have just been giving him what he can take.  I think it's better for him to receive less than he's supposed to have, than for him to be throwing up every day as I try to over fill his tummy.  I've researched online and tried so hard to find a solution on my own.  I have two theories, both of which the doctor agreed were plausible.   1.) Nexium is no longer working.  2.) Delayed gastric emptying has returned, causing his stomach to retain a large portion of the feeds.  Dr. Rosenblum said Levi is on such a high dose of Nexium that it should be working great, but if his stomach isn't emptying, it may not be getting absorbed by the body.  First and foremost he'd like Levi to have a chest x-ray to rule out pneumonia, and maybe a bronchoscopy.  (He's had several chest x-rays for that reason, but the last was 3 weeks ago.)  Once he feels confident that a respiratory problem is not causing the vomiting, he will send Levi for another gastric emptying test and an upper GI with small bowel follow through.  In the meantime, I'm trying to get some stomach ph strips so I can see if his stomach is acidic, and before each feed I am to pull out stomach contents into a syringe to see what he is retaining.  If he is indeed still full, I'm to throw away what I pull out and give a fresh feed.  I'm very interested to see what I'm going to find today when I do this for the first time.

We've also restarted Neurontin.  Levi was constantly cranky with many periods of screaming.  Almost immediately after the first pill, he took a nap and woke up happy.  We've since increased to 3 doses a day.  Here are some cute pics of our little guy.

Asleep on the floor while we ate at Kobe's.

Does this look comfy??  Time for a twin bed!


Riding my trike!

SO much fun!!

1 comment:

  1. Levi is so blessed to have you as his mom and Pat as his father. The two of you are a great team and you all make such a wonderful family. Praying for a quick resolution and many great days ahead.

    Pastor Mike