Meeting Time...

Well today was the day that we had our meeting with everyone. There was Dr. Miller, Dr. Parks, Dr. Piroozi, Patricia the Nurse, Ingrid the social worker, my boss Major Turner and Rachael and I. The meeting went a lot longer then we had anticipated because Dr. Parks likes to be very detailed in his explanations (to the slight frustration of his colleuges I might add...).

The main part of the discussion revolved around where Mia was at and what phase the doctors felt she is in. All three of them felt that at this point she was in a steady state mode or put in better words she is no longer improving dramatically like we have seen over the past couple of weeks. They all feel that at this point, it will be best to go ahead and put the trache in so that we can start to stimulate Mia and be more active with her. The general feeling is that Mia will likely be on the vent for at least another month or two and it would not be good to continue her on the breathing tube where she can't be handled.

Rachael and I agreed and said that we were fine with the trache and the feeding tube since that looks like it will be easier for everyone involved. The issue is the current breathing tube that Mia has is likely full of bacteria and the doctors would like to replace this tube a couple of days before the trache surgery just to insure that the bacteria can't cause any problems. During the replacing of the breathing tube, Dr. Parks the lung doctor and Dr. Piroozi felt that it would be good to test her to see what Mia is capable of. They want to pull the breathing tube out and see what she does and for how long she will do it. The general consensous is that she will likely fail fairly quickly but at least it will give us all an idea of what she is capable of.

The complication to all of this is, Mia was pretty difficult to get the breathing tube in the first place. If she hadn't been so difficult in the first place they probably would have changed out the tube a couple of weeks ago. This leaves us all in a tough spot because we have to balance the need for knowing what Mia is capable of with her long term safety as well. There is some concern that there might be trouble in getting the tube back into Mia in a timely fashion and the effects could be long lasting.

If I had to guess the doctors long term opinion they don't believe that Mia will be impossible to be weaned off of the ventilator but they feel it is going to take a lot longer than a month or two. If this is the case than we are now playing into this timeframe of how long can we keep her at the hospital and what do we do afterward?

Doctor Parks told us that in Nevada there really isn't the infastructure in place that would be able to take Mia in her current condition. Given her instability on a day to day basis Rachael and I would have a lot of concern of trying to take her home at this point. We did bring up the fact that we would be looking into a longer term care facility for Mia if she could no longer stay in the hospital. It seemed like the general feeling was looking for such a facility in the Bay Area would likely be the best long term strategy if that is the road we go down. Rachael and I are still pretty hopeful that Mia can be weaned off the vent in a month or two, considering all of the progress she has shown and what she did about 10 days ago we are confident that Mia will continue to surprise everyone.

One thing I do want to clarify a little is that Rachael and I will eventually be taking Mia home with us regardless of whether she is on a vent. However, we want to try as much as possible to wean her if possible while in a facility because it can be done more agressively. We also would like Mia to be a little older, mature and stable before going that route if that is where we are headed. We know that God created Mia and he know's every little detail of her body and that he is in control of the situation. We are praying and hoping that at sometime in Mia's future she will live a life free from a machine.

As for Mia herself today, she seemed to be knocked out pretty well, at least when I saw her. It looks like the additional medicine for her seizures is definitly impacting the amount of breathing she is doing on her own. She is going back and forth between regular breathing and riding the vent. The nurse said that it will probably take a couple of days for her body to adjust to the additional dosage and to expect this back and forth for a bit. She did have another MRI today and the doctor noted that it looked pretty much identical to the first MRI. This in essence is a good thing because at least it confirms the first MRI and it also shows us that there isn't something like a blood clot at play here causing problems.

So things to pray about...

1. Taking out the tube, the test, and most importantly getting the new tube in place.

2. The upcoming surgery and recover time, and the increased risk of infection.

3. Finding facilities in the Bay Area that are well regarded and that our insurance will pay for.

4. Seizure control. If Mia grows out of her seizures than she won't need the additional medicine that seems to knock her out.

5. Time and timing... There is a lot of stuff that might have to be planned in a short amount of time.

Thanks again for all of your thoughts and prayers. Rachael and I are feeling much more relieved now that we have some sort of long term strategy that seems to be developing. It isn't easy trusting in the Lord and waiting on him but Mia has shown us over and over that she is a fighter and we know that God is watching over her every moment.