Friday, January 23, 2009

Update on our appt. with the Pulm

I just copied from his caringbridge site which seemed easier:

Our appt. with the Pulm went well. It's always nice to find a doctor you really like! He went through Emeric's history and then asked what questions we had and was very thorough.

Basically Emeric is aspirating and we found this out 2 weeks ago when we had the swallow study done. Since then we've been thickening his liquids because that was what it showed he was aspirating on was thin liquids. We've also noticed him aspirating on his reflux. The pulm said that aspiration will in time cause lung damage. He said that it's slow but it will happen. He said right now we can hopefully take care of it by thickening his liquids and giving him more easy to chew foods but if he indeed is aspirating on his reflux and starts developing pneumonia, chronic cough, wheezing, etc. than we're looking at doing a Nissen Fundo. I don't know much about this procedure but it's basically where they wrap the upper portion of the stomach around itself and that is supposed to help with reflux. If they do this they'd put a feeding tube in and he would not be allowed anything by mouth. This would only happen if the aspiration starts getting worse and he starts developing the symptoms I said above. He said it really depends on the progression of the Mitochondrial Disease If we had a prognosis and we knew things would deteriorate than they'd look more seriously at the option of surgery with the assumption that this is going to get worse, it's just a matter of time. If there's the possibility of improvement than we're fine to keep doing what we're doing. The problem is that there's really no way of knowing this.

The worry for me is that in the last couple months Emeric has started running a low grade fever nearly all the time, being more tired, and just looking like he might be getting sick. But then he doesn't. The Speech Language Pathologist asked if he ran a fever and I said he does most days and I guess this can be a sign of chronic aspiration. He said anytime the body is working to keep out infection(like pneumonia) you'll see the body temperature raise. So, all of this makes me wonder if things are slowly progressing in this area. All we can do is hope we're wrong I guess.

He referred us to a GI in Fargo and he said he would like to monitor things just to make sure things aren't getting worse. He thought it would be a good idea to consult with the GI in Fargo because if we do end up having to do the Fundo(or maybe if he has another idea) they can work together on a plan. He also hoped that we'd get some idea of a prognosis of his disease when we go to Houston in February.

So that's it for now. We'll continue to thicken all liquids and watch for any changes. It makes me sad to think we have yet another specialist we need and while I know a lot of kids with Mitochondrial Disease deal with GI issues I was hoping Emeric would always "just" deal with the mild reflux and that would be that.


ben and erin said...

oh nicole, i don't know how you keep all this straight. it's hard for me to comprehend what you guys are going through with emeric and all you need to know to be able to care for him. God has certainly entrusted you with a huge task.
i'm glad the appointment went well and that you liked the doctor. yes, that always helps! i'll continue to pray for his healing.

John and Melissa said...

Hey Nicole
The "fundo" and the gtube are the best things we could have ever done for Ryan!!! Every bit of his aspiration and lung problems went away immediately!!! So if one day you decide that is something you need to do it really is not near as bad as you might think!!! It is sure alot better than the aspirating and respiratory problems!!!

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