Day 2. It’s hard to believe it’s only been two days, well jut over one really. It feels like days and days but it’s only been 30 hours since we got the call. I went home around 6am and got a few hours sleep then went into work. It was good to be able to catch everyone at work up and get all the hugs and support at the station. Now on to what you really want to hear about.
Maddy is doing OK. However it is a rough road and will continue to be for a while. She got out of surgery at 4:15am and we got to see her at 4:30. That’s when I took the picture above. She had a lot of fluid on her that the doctors wanted to shed using drugs that put her kidneys into overtime, Lasix, so she can move the fluid out. Her kidneys are in really good shape so over the last 8 or 10 hours they have mostly done their job. They are also closely watching out for her to be shedding blood into the her chest cavity, and so far that all looks good as well. Not an abnormal amount of fluid coming from her chest tubes and drains and it’s pink not red, so she is not bleeding. Also a good thing! They have her on very heavy immune suppressants so we are not allowed in to the room with her for the first 24 hours. After that we can go in wearing masks, gowns and gloves. However she won’t be awake for a while yet.
Here is where it gets a little complicated, or as Sue the CF coordinator puts it, “bumpy”. They will keep her “asleep” as long as she is on the ventilator. Her new lungs are being rather slow to wake up so the ventilator will have to keep working longer. The X-ray this morning showed a lot of fluid on her lungs. The Lasix I mentioned earlier should help with that a lot, we won’t know how much until she gets another X-ray tomorrow morning. She has gone down from 100% O2 to 60% on the ventilator so she is showing improvement. But at the moment the ventilator is doing all the work of breathing. She is set at 12 respirations a minute and she is doing about 14. Thats two breaths of her own which is good but not a lot. If I understand the nurse right the longer the ventilator does the job for her the more rest her new lungs are getting which is good for them. They are just taking longer to wake up than we thought they would.
What all this boils down to is she will not be up and moving as soon as we thought. Maddy’s nurse told me to not expect them to wean her off the ventilator until sometime this weekend. As soon as that happens she will be awake so I am making arrangements to be available when that happens. I will hang near or at the hospital today in the hopes of speaking to the doctor when he does the evening rounds. If he indicates the same wake up time I will then go home and sleep. Everyone has said to get as much rest as I can now so that I am available when they bring her out of it because she will be in a lot of pain and will very much need the moral support. So that’s what I’m going to do.
More to come...
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