The Meeting

WARNING VERY TECHNICAL INFO AHEAD

So my day did not start well b/c I was stuck in traffic for over 2 hrs which made me late for the meeting. If you know me, I HATE HATE being late. Then to top it off the only drs. that showed was GI, neuro and pallative care dr. The Pulmonlogist apparently NEVER attends these type of meeting. Gotta love how committed a dr. she is huh. Kinda of one of the important drs. considering his primary problems now are respiratory and GI issues.

Anyway. The GI dr. was not surprised with his reflux issues said that alot of kids w/ mito max out there meds overtime despite any changes you make. Oh great!!! He also felt that he has much more underlying motility issues (moving food through his system) and that doing a fundo would not help those issues. It would only help the reflux from coming up further and then aspirating. He said that I would more than likely have another Isaiah on my hands in terms of the cyclic vomitting. Just as I thought. Although the neuro did not agree with any of this and thought it was perfectly fine to do a fundo on him as she didn't think Isaiah's issues were a result of the fundo. That I thought was total BS.

He is definetly ordering a ph probe and endscopy to determine how bad he reflux actually is which I am in agreement w/. He also wants manometry testing done which is pretty intensive but it will give us alot of answers of what is going on with Avery. Problem is it can take a long time to schedule and get the results. The one dr. that does it is in Boston but one of the very few in this country. Luckily there is a new dr. on board recently that can also do it and this is who we are going with.

In the meantime, he wanted to start Avery on TPN (IV nutrition) at night to give his gut a rest and hopefully minimize his reflux during the night. THis is the BIG, I am not sure about and not quite understanding. This can bring many risks.

1. His port (central line) would be now accessed daily which bring huge infection risks.
2.Increased risks of blood clots which he has already had a major issue with.
3. Lots more work for us (as if we need any more)

I certainly have to get more info about this before I agree to it, however I would much rather do this than get a fundo. The plus is that we could probably convert alot of his meds to IV form which would also be better for him. He is vomitting and retching tons just with meds which is at least 3-4x a day.

Also the neuro. increased his neurotin at night which hopefully helps him to sleep more at night. We are taking away his clonodine and possibly klonopin (you have no idea of many meds this poor kid has). We will eventually at another med. But all of this will be done VERY slowly and one-by-by.

Now it would be great if all the med. changes would solve our issues but somehow I doubt it. So some hospitalizations will be planned soon and lots of decisions to make based on the results of all the testing.

IF you got this far, congrats and thanks for reading, If you got this far and still have no idea what I am talking about. Don't worry b/c I hardly have an idea what I am saying either. LOL.