Learning More...

Today was a different day for us and for Mia. After recovering from the last weaning attempt by the hospital Mia was a little more active and responsive today. Two days ago, the doctors tried weaning Mia down from 15 breaths per minute to 13 breaths per minute. As expected, she did not tolerate it very well as her carbon dioxide levels where off the chrts. She is now back at 18 breaths per minute and doing much better. The doctors are going to try a different method of weaning by lowering the amount of air provided to her and seeing if she will make up the difference. They do this by lowering the pressure of the air given to her by the machine while leaving the amount of breaths at 18 per minute. We are hoping that this method proves to be more effective.


What was different today was that I got the chance to sit and watch Mia by myself for several hours today. I did learn quite a bit about Mia today that I had not noticed before. If I had to put my finger on it, I would say that Mia has grown dependent on the ventilator not because she needs it, rather because that is the only thing she has had since birth. What I saw was that whenever Mia's blood oxygen saturation was at 100% Mia would almost never take a breath on her own, she would ride the machine entirely. Sometimes though, Mia's oxygen saturation would start to fall from 100% down to around the low 90%s. What would happen then was Mia would start taking additional breaths on her own. She would take several breaths over the course of this "desat cycle" until she had gotten herself back up to 100% and then she would be back to riding the ventilator. Now, the number of additional breaths weren't much most of the time but something was definitely triggering something inside of her to take those additional breaths in order for her to get or oxygen back up.

She repeated this cycle I think three times over the hours that I was there and I think this is a very big piece of the puzzle. I'm obviously not an expert on this but this is at least showing that Mia can tell when something isn't quite right and she knows what to do about it. The question in play here is it enough breathing to keep her sustained on her own. My guess is, if she had more of these desat cycles that she would probably get it figured out fairly quickly. Watching other babies at the same time I realized that most babies don't stay at 100% saturation all the time and in fact generally vary from anywhere between 85% on up to 100% and it is constantly changing. Mia on the other hand has spent probably 99.999% of her life with her blood oxygen saturation at 100% and as a result she has never really experienced those cycles of desaturation and and learning to compensate for them.

One of the questions that this answers is why did Mia let her CO2 level go so high when she was at 15 breaths per minute. Observing what I saw today, my guess is that because her blood oxygen saturation was kept at 100% she did not sense the need to breath more to blow off the extra CO2 that was building up in her system. Had her oxygen levels been allowed to wander as they normally would in a body she might have been able to deal with the lower breaths by the machine by adding her own.

The million dollar question in this (at least as far as my health insurance is concerned...:) does she have the ability to sustain herself with her own breathing. My gut instinct is, if we took her off the ventilator that she MIGHT actually do okay. Unfortunately that question is a one way street with the wrong answer being disastrous.

This is where the hospital is coming into play now. I spoke with one of the doctors today who informed me that she felt that they had done about all they could for her and that Rachael and I would have to make a decision on Mia's future, whether she come home with us, or if we were going to let her go. I told her that as far as we were concerned, as long as Mia was making signs of improvement, Rachael and I were happy to just let her be and see where she takes us. Of course, the other factor in this is the other doctor(Dr. Paroozi) that we have spoken to (and the one we like the most) has said that Mia just needs time and that we should not be trying to rush anything. We like this doctor because he really looks at the patient and not just the charts. He is also content to let things progress on there own and to give it some time. You can probably understand why we like Dr. Paroozi so much, it's not that he's giving us false hope but rather because he is content to watch Mia and see where she goes.

Now, we recognize that even our favorite doctor will at one point have to come and tell Rachael and I where Mia stands and that it might not be the news we want to hear. At this moment, recognizing that Mia does look like she should be wean-able from the ventilator we are starting to look into facilities that deal with just this sort of thing. My sister, Katie has found a place down in LA that sounds like a good candidate for Mia. This facility works to wean people off of ventilators and to rehab them as much as possible. Apparently they have had some pretty good success with scenarios that make Mia look like a cake walk. Of course we realize that Mia's case might be different than all of the other people they have had success with but we think that this is definitely worth perusing.

So, our game plan right now is to TRY to wean Mia off of the vent while at the Children's hospital. If that is unsuccessful than we will try to have Mia moved down to this facility in LA and let them work with her.

For prayer, please pray that we will be able to find a facility that has availability for Mia. We are only at the beginning stages of looking into this and we don't even know if Mia would be eligible or not. Also please pray for wisdom for Mia's doctors and letting her have the time that she needs. Please pray for the logistics and time frame of having to move Mia if that is what it comes down too. Finally, continue to pray for Mia, she has been through a lot over the last three weeks and the continued weaning attempts are very taxing on her.

Thank you all for your prayers and support.

Robert