Looking forward, moving forward?

(WARNING: This is a long post, lots of info! Maybe grab a cup of tea before reading!!)

On the tail of yesterday's progress (albeit just mental so far!) I met today with the pulmonologist who is now consulting on Emma's case, and has worked with just under a half dozen moebius cases (that's a lot!).

Before I tell you what he said (can you stand the suspense!!) let me reiterate just how awesome God is and how perfect his timing!

As you may recall, on December 15 (according to my blog!) we first met a neonatologist who was on for the weekend who mentioned a pulmonologist who knows moebius. Apparently he could not remember the guys name though. Well, this neonatologist was scheduled to be on duty again as of Tuesday for a couple weeks. I guess he remembered the pulmonologists name and emailed him. Well, the pulmonologist just happened to be working here this week! He is not here very often. And is now working with Emma in terms of her airway development!

Okay, so moving on! Let's call the pulmonologist Dr. R. Dr. R believes that the majority of emma's brady episodes are caused by reflux and wishes he had known about her before she had her gastroschisis surgery as he would have told them to do the g-tube and nissen procedures at the same time, knowing they are fairly standard for Moebius! Anyway, he thinks they should be done as soon as possible. It's up to her surgeon though.

If she can't have these procedures done until she's bigger, and thus won't be fed into her stomach either because of the reflux, Dr. R said she could have an NJ feeding tube, which goes even deeper than it is now and has less chance of coming out! So she could go home with it.

With regard to the other brady's, Dr. R believes they are from obstruction in her airway. Probably still the tongue, or just narrowness of the airway. Clearly the canula helps when she is sleeping. The reason she is fine off it for a while, then starts to brady more is that she gets tired doing all the work herself! So he recommends that she stay off the canula when awake, and then at night or when sleeping she goes on CPAP (Continuous Positive Airway Pressure). Again, she could come home with this. In fact he has suggested they use the home system here so there is no transition.

(Are you sensing a theme here!!)

Now, even with the CPAP, we can go out of the house, and it won't hurt for her to take a nap in the car say. We'll have a pulse-ox monitor when we go out. We can also travel, by plane say!

So, we now have clear suggestion for the means necessary to get out of here! I am sure there needs to be lots more discussion between the docs though, so we may not get home as fast as this new info might indicate. BUT there is a bright light at the end of the tunnel!!

Did I mention he also said that they need to give her way more calories because she has to do so much more work on breathing and stuff! She has still been gaining an average of 20g per day and they'd like to see 30g or 40g.

Dr. R also said that Emma is very cute (well, duh!) and that she has a good cry and cough, so he is hopeful she is not missing many of the other nerves that are sometimes absent with Moebius. The swallow study on Wednesday should tell us more about that.

I think I can say that Dr. R fits the description of a godsend! After all, we could have been blindly groping for a solution for some time! He also gave us his email address and said he's happy to answer any questions.

I'm so enthused I just realized I didn't eat lunch!! See you later!