November 29, 2005:

7:00 pm – Email from Miriam:

I finally got to talk to the resident doctor today. She explained what the plan is and also explained better what happened over the weekend. I had never got the full story.

Basically over the weekend when they tried to wean Emma off the ventilator her CO2 levels went way too high (68 when they should be in the 30’s or 40’s). So they had to turn the ventilator back up. She did fine for a bit, so they think that her lungs just got too tired trying to breathe themselves. They are trying to wean her again, but they have to watch her CO2 levels and also how hard the ventilator has to work to help her breathe. So far that pressure has been too high to turn her back down all the way because they are worried her lungs will get tired again. The theory is that she was actually quite sick when she got transferred back to ICU again and is still trying to recover.

The deal with the CO2 is that her levels may actually stay high normally, we’ve only checked them when she is having trouble. If that is true it could mean that is what is causing her spells and also affecting oxygen circulation to the brain and lungs. If she is well and on oxygen and still has high levels they will have to do some searching as to what is causing the problem and how to deal with it.

As far as the heart cath, she is probably not going to get another one. The doctor who would have been doing it said that he didn’t feel like it was worth doing. He said that they would just not let her go home without oxygen since we know that she does better with oxygen and has spells without. This is great news, the heart cath is a fairly big procedure, so that gives us one less thing to worry about.

So the plan is to wait as long as possible for Emma’s lungs to start working better and then to take her off the ventilator. Then they will put her on oxygen and see how her CO2 levels do. If they are OK, we can probably come home. If not, I imagine we will be staying for more tests.

I am trying to get the doctors to get an ear doctor to come up and look in her ear. She had some bloody wax in it the other day and the resident looked in it and didn’t see anything, but I want an ear doctor to look at it. It is the ear that she didn’t pass the hearing test with. I want them to look for colestiotoma, which is the ear condition that my sister Hannah has. It is genetic and the earlier we catch it the better. Hopefully it is nothing, but I think it needs to be looked at.

Well, please praise the Lord that we don’t need the heart cath and that I got to spend so much time with John and Elise last weekend.

Please pray that Emma’s lungs will heal quickly and that she will be able to come off the ventilator. It is hard to see her so sedated and feel like she can’t even continure to develop until we get past this point. Please pray that her CO2 levels stay low after she is off the ventilator and that the oxygen takes care of her spells. They are also concerned that there may be something different in her brain since her last MRI that may be causing some of these problems so pray that that is not the case. She has another MRI in January, which will give us a good idea if the damage is better or worse or the same.

Thanks everyone, Miriam