Maybe a clue...

Well, today Rachael and I think we MIGHT have a clue to Mia's condition. We have noticed that for whatever reason, Mia will usually only start to breath consistently while she is on her side. This has been collaborated by one of her nurses who noted that she seems to prefer her left side. We put this together yesterday when I asked the nurse if she would place Mia on her side after she spent most of the day on her back. The nurse turned Mia and within minutes, Mia started a very consistent breathing pattern. Then, the nurse realized she had to change Mia's diaper so she turned Mia back onto her back and almost immediately, Mia stopped breathing on her own. Later according to my brother in law (I had stepped out so he could come in), she was back to breathing on her own again.

I explained this to one of the doctors today and I was a little frustrated that she seemed to not really think it was much of a discovery. They are going to continue to try to ween Mia off of the ventilator over the next couple of days. I asked her, why would she not want to first figure out this issue and she went off on a tangent about stuff that really didn't answer the question. I think the doctor's are getting stuck into this area of not being able to explain Mia so they are only trying to push her limits and seeing how she reacts. Please pray for Mia that she will not be stressed by this weening.

At this moment we have started to get a good feeling on the doctors that are watching the hospital. All of them are very good but some tend to look more at Mia rather than just the text book and numbers. Rachael and I have figured out that at this point it is more important that we look at what Mia is doing than to listen to the Doctors.

On one other positive note, the doctor did mention that her muscle biopsy did come back as abnormal. She said that they ended up sending the sample off to another lab to get another opinion. The doctor didn't really say what the significance of this finding was or how it could be affecting Mia. Hopefully in the next couple of days we will get a better explanation of what this clue means.

Putting everything together... Rachael and I are thinking that it's not an issue of Mia NOT being able to sense that she needs to breath rather it's something that prevents her from comfortably doing it when needed. The muscle puzzle piece ties in nicely with this theory because it could be that she is not physically strong enough to breath while on her back and that is why she rides the ventilator. The hope is, if this is really due to a muscle issue than hopefully this is something that can be treated.

With all of that said, we are grateful for all of your prayers and support. So many people have been asking if there was anything they could do and the only thing we can say is to pray. Right now I think the biggest prayer request is that the doctors will really look at this position and breathing issue and start to ask questions about it. Also please pray for Rachael, Mercedes and I as well as Rachael's family who is with us. We are all starting to feel the stress and strain of being at the hospital all day, and by the evening we are all very exhausted.

Thanks again for all your prayer and support.

Robert