Wednesday, July 20, 2011

Surgeon Call

The Chief of Pediatric Surgery called today (not the surgeon we saw previously). She looked over Alexander's upper GI and went over the results.  Even though the hernia didn't show up on the test, she said that it only means it isn't large.  It is likely smaller and possibly transient - which is what we thought.  At this point in time, she is on the fence whether or not to do the surgery.  Because of his symptoms and how bad he gets during a bad spell, he is definitely a candidate.  But because he is doing so well developmentally and (GI tract aside) is very healthy, we all hesitate about doing it.  She wants to see him in August to get an accurate assessment of his weight/growth and discuss the surgery more in depth. 

Alexander continues to feel well following the upper GI and likes reminding us that he's, "Such a good boy at the doctor!"  :)  Love him!

Tuesday, July 19, 2011

Upper GI - Done!

I would just like to start by saying Alexander is amazing - what a difference a year can make!  His comprehension is at the point where he can be preset really well for things like this, and because he has so much experience with these things (sadly), he takes it all in stride.

The upper GI showed reflux, but not a hiatal hernia.  If it wasn't for the suspicion of the hernia, they weren't going to redo the test.  (They thought it was a bit ridiculous we were there again).  The doctor said that based on his last upper GI you can't dispute the presence of reflux.  It was nice to speak with someone who validated everything we've been through!

We will be hearing back from the surgeon next week to hear her assessment of the results.  We suspect that they will not want to perform the surgery, and refer us back to his GI specialist.  But we will see! 

Tuesday, July 12, 2011

We met with a general pediatric surgeon today.  The appointment definitely went differently than we had thought it would go.  Alexander is going to have an upper GI scheduled to get a clearer picture about the hiatal hernia.  Apparently there are very different opinions on the interpretation of test results and symptoms over the past 2 years.  This doctor doesn't feel there's enough evidence to say he even has acid reflux (not that he has any other thought on a diagnosis).  It was a bit like being in the Twilight Zone...

Tuesday, July 5, 2011

New meds

Alex has continued to not much better.  Eating and drinking have become such a struggle for him.  Since everything he eats has been refluxing back up, and he usually chokes when he tries to drink, he has decided that eating and drinking are not really for him. Not the best plan for anyone, especially a growing toddler.

I spoke with his GI doctor this morning.  She wants to switch from the Prevacid to Nexium (still twice a day) and see if that gives him any improvement.  He also woke this morning with a congested chest, so we were sent to the pediatrician to rule out pneumonia. Because of the frequent choking and aspiration, reflux induced pneumonia is always a concern.  Thankfully, his chest sounded okay.  If the cough worsens, he will get a chest x-ray.  

He does seem a little better this morning.  After 2 hours he agreed to drink some milk.  He was then more willing to eat and drink.  

We will watch him to see if the Nexium helps until Friday.  If there's no improvement, the GI specialist will set us up with an appointment for us to speak with the general surgeon and decide if the surgery is right for him.  Alex's pediatrician has some concerns about the surgery and will be involved in the decision making process, as well.

Friday, July 1, 2011

Pathology Report

Alex's doctor called this morning with the pathology report.  The biopsy from his esophagus (which was the one that looked like it might be questionable) showed changes to the esophagus as a result of the reflux.  Thankfully, it didn't show some of the other conditions that she was concerned about. 

The plan for right now is to keep him on his meds, and switch to rice milk for two weeks.  If there isn't a change with the rice milk, then he can go back to soy milk.  The doctor is contacting a nutritionist, because we need to add some supplements to the rice milk.  He also needs to be on a high (healthy) fat diet and take a multi-vitamin while on the rice milk. 

As far as the hiatal hernia surgery, it does look like he'll be having it at some point.  The conditions that will implement it are vomitting, pain, and poor weight gain.  Since he meets two out of those three conditions at this time, we are going to work with his diet and reassess in September when he goes back.  If he gets really sick between now and then, of course that appointment will be moved up.  It's a 2-3 hour surgery with a very long recovery for a 2 year old, so everyone would like to put it off as long as possible.  It's also not a "cure all."  There's no telling how much it will benefit him, and doesn't mean he won't need additional surgery in the future. At this point, it's his next step, though.

This week he's been getting progressively worse - sleep is becoming a nightmare for both of us.  We're hoping this weekend brings some improvement.