Carbon dioxide poisoning

 

Well Maddy just can't seem to get any breaks. Now her lungs have began to fail to the point of that they are no longer able to properly scrub the Co2 from her blood. The long and short of it is we came to the Pulmonologist because she has been fighting killer headaches and massive fatigue for about two weeks now. Toward the end of last week they got so bad that she could barely get out of bed each day. When her condition didn't improve we called the docs and they had her come in. They did an arterial blood gas and her Co2 level was 70 when it should be 30. So they checked her into a room and put her on a BiPap machine to help her lungs clear the Co2. She was on it continuously for 14 hours then the doctor said she can take it off when she is up and active but when she goes to bed or takes a nap she needs to have it on. Having the mask pressed against her face and the pressure from the BiPap machine gives her really bad anxiety and hasn't really made her feel any better yet. They are working with the insurance to get a home machine ordered. Once that gets here and we are trained on it I'm pretty sure we can go home.

Not sure how to put this next bit delicately but I will try. At this point the doctors say there is nothing else they can do to make her better. She is still in rejection so they can't work her up as a transplant prospect. If her lungs continue to fail the only other option is to put her on a ventilator and if they do that her lungs will never be strong enough to get off agin. So the option if things get worse is to try and prolong her life on a vent and see how much longer that gives her or allow her to pass on without using any extraordinary measures. Right now Maddy is fighting with all the strength she has but honestly that strength is failing. She does not want to spend her last days connected to a ventilator. She also does not want to suffocate to death. She has heard of people in not too disimilar circumstances getting put on a vent and being able to come out stronger. I do not know if this is a possible outcome for her but I would like to believe it is. So far the only doctor in the group who has an opinion about it has told us that is not an option.

We came in Monday at 1:00 and I wrote all of the above on Tuesday. It's Wednesday morning as I write this and I'm waiting for the doctor to come by. The dr who admitted us had mentioned calling in palliative care, but dr. Rolf didn't mention that at all yesterday and we have yet to hear from anyone regarding end of life issues. Dr. Rolf's attitude when he did rounds yesterday seemed very positive and upbeat. He was so jovial and quickly in and out we barely had time to process what was going on. Later we asked if he could come back and talk to us so we could get his point of view of this whole situation but he was already on with he day of procedures and said he would speak to us tomorrow. Which is now today. Maddy and I talked about it yesterday while it was quiet in the afternoon between all the in and out activity of a hospital day and came up with a hand full of questions we intend to ask him today. My first question is regarding the difference in treatment from one doc, mr gloom and doom if you will, and the other, all rainbows and sunshine. We would like a complete picture and don't know if the pessimist is being over cautionary of if the optimist is being too cavalier. I will not leave you in suspense. I will save this blog and wait to post when I have all the answers we are looking for. And now you know why we have been so silent these last few days.

10AM Wednesday and we just finished speaking with Dr. Rolf. First question was "is Maddy on her death bed?" Answer; "I don't think so, but she's not in good shape." Here is Dr. Rolf's take on the whole situation. Maddy's antibodies are the most resistant kind to have. One type of antibodie she has he said thay have never successfully removed from anyone. In her current state of health they can not even attempt another run at fighting her antibodies. So that door remains closed for now. The Co2 poising Is what caused her rapid weight loss and is the reason she is been so out of it and weak. He said the BiPap machine will help that. Her blood work is already starting to look more normal. As long as she can tolerate sleeping with this machine every night she should be able to start getting her apatite back and get stronger. I asked what we can expect as far as quality of life is concerned in her current state. He said if she can start eating and put the weight back on we can expect a quarter to half way decent quality of life.

All and all I would say not quite as bleak an outlook as we were given on Monday.

The current plan is to be in the hospital until we can get the equipment issue worked out with Maddy's insurance. They will concentrate on helping get her appetite and weight going back in the right direction while we wait. He said we should pick out our vantage point for the Gasparilla invasion because we will be here through the weekend.

Maddy seems to be feeling stronger this morning. It is apparent to me that the Co2 issues are clearing up. She is still too weak to move about on her own, but said she wants to try to start going for walks to build her strength back up.

Thanks again for all the prayers and positive vibes. Maddy will continue fighting and we will take it day by day.

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