More Updates

Dear friends and family.

Thank you all for all of your continued thoughts and prayers. Sorry about the somewhat erratic updates for the past couple of days. Our schedule has been a little off. Also, thank you all that have been leaving comments and words of encouragement. Rachael and I read every single comment that is left and they have been very uplifting. I wish we had more time to be able to respond back to those of you that are writing but at the moment it's just to much work for us.

Mia has had another good day. They have her O2 settings back at 21% which is really good and they also have her vent breathing rate down to 23 breaths per minute. Mia is usually breathing above the vent anywhere between 30 and 60 breaths per minute depending on what she is doing. Her CO2 levels where also in the 40s to 50s most of the day with an occasional 60 range. She did have some tummy time today as well but she could not stay there long because she started to desat a little. One of the things we found out today is that the breathing tube had inched it's way a little to far inside Mia and it was causing some issues. They have since pulled it out and I guess she is doing better for it.

Rachael and I got the chance to talk with Dr. Piroozi today. It's been about a week since we have seen him because he has been at other hospitals this week. He is still very positive on being able to ween Mia off of the vent and he really thinks that it should be possible to do it. We asked him what he thought about the trach and he said that at this time, it's better that we do not do the trach. As long as Mia is on the breathing tube the hospital is unable to send Mia home prematurely. If we do put the trache in, then the hospital would be able to discharge her when they felt it was appropriate. We are glad to have this advice because even though we think the trache would be much more comfortable for Mia and even help with the weening, we would be concerned about Mia being sent home before she is ready.

Of course the delay with the trach means that Mia will continue to be on the breathing tube. The problem is, she is currently growing out of the breathing tube she has and at some point will need a larger size. Ordinarily this would be a trivial thing but since Mia was very hard to intubate in the first place we haven't found anyone at the hospital that is volunteering to do it a second time. We spoke with Dr. Piroozi about this and he said that it would be best to wait as long as we can on the current tube and when they need to replace it to use that time as a chance to test her. He said that we could take the tube out and put her on oxygen through the nose and see how she does for a little bit. If she picks things up than we won't need another tube. If she doesn't do well then we can put the new tube size in and continue on from there. It's a pretty bold move but it might be worth the risk as it will really allow us to see what Mia does on her own and see if she's really capable of sustaining herself at this point. Based on what we saw on Saturday my gut instinct is that she probably has a pretty good chance of being able to do it.

On another note... Rachael and I took Mercedes out for the day today. We haven't gotten to spend a lot of time with her and we felt that she really needed some time with us. So we took her to Target to let her pick out her first soccer ball! Mercedes was very adamant that she had to have the blue soccer ball. As we were walking out of Target Mercedes ran into a little girl that was giving away roses. She had one left and when Mercedes saw it she loudly proclaimed "flower!". The little girl was very nice in giving her last rose to Mercedes!

We then took Mercedes to the park so we could play with her new ball. At first Mercedes wanted to go to the basketball courts with her ball but Rachael and I convinced her to take the ball out to the fields. When we finally got to a place to kick the ball we put it on the ground for Mercedes. Of course, she was all confused and didn't want her ball to get dirty so she kept on picking it up. Rachael and I had to kick the ball a couple of times before she got the idea that you are supposed to kick a soccer ball! She then had lots of fun running after the ball and kicking it. When we got to a small little hill she had a blast carrying the ball to the top and then letting it go and watching it slide down the hill. Mercedes had a lot of fun and wasn't very happy when we had to leave the park...

On another note... We might finally have a new car! Or at least, we have a car located and we think we have a deal almost worked out. We are now just haggling over the last couple of hundred dollars. Of course, the car just happens to be in San Francisco so I'm going to have to fly out sometime this week and pick it up. Boy... I really hate the drive from the Bay Area to Las Vegas...

For prayer requests here are a couple of things you can keep praying for.

Mia's Lungs: Being on a ventilator for a long time can cause damage to the lungs. Pray that Mia will be able to stand up to the damage and that she won't have any long term affects because of it.

Doctors Meeting: All of Mia's doctors will be meeting on Monday to discuss what they feel is going on with her. From that meeting, they will have a family meeting with us to discuss what the long term plan for Mia will be. Pray that the doctors will all be willing to give Mia the time that she deserves so she can really show us what she is capable of.

Mercedes: Mercedes normal schedule has been turned upside down lately. She's been coping pretty well with it but recently we are seeing that it is catching up to her. Pray that we will be able to figure out some sort of reasonable schedule that will allow her to have the naps in the afternoon that she needs.

That's what I have for now. Thanks again for all of your thoughts and prayers.

Robert