Thank you all for the comments and concerns about Calin's health. S & L, Liz, Marsh, my parents, and I all converged by accident at the hospital this morning. Calin was far higher on the alertness spectrum than I had expected and was able to write on a clipboard with some slightly scribbly writing. She was also able to communicate very effectively with hand gestures although she cannot speak while on the ventilator. At 1:00 she looked at the clock and wrote something like, "I assumed you were all going to lunch somewhere." I said, "your mom has food here and was thinking of staying longer." Calin shook her head and waved us all out of the room, Liz included. In the hallway Marsh says, "well, she's still in charge," as indeed she was, and we were all comforted to see that.
Among her written requests were for her pink waterman pen, which she wrote was in the right drawer of the rolltop desk. She wanted me to make sure it was full of green ink, which would be in the opposite drawer. She also wanted her ipod, dvd player, computer which I was scolded for taking home, and the movie that recently came from Netflix, "Catch and Release." I don't know how well she'll be able to operate these devices, but if she's like she was today, she'll do OK, I think.
The other thing Calin wrote was, "Is anyone else coming by later?" The other visitors and I had already discussed that it was time for visitors, and she was more stable on the ventilator, so please, those of you who are free and in the area, feel free to visit any time of day or night. If the room is crowded, maybe wait outside or came back later. Also, Calin does appreciate some time alone and peace and quiet so it's not like we should have a round the clock watch or anything. At the UW Medical Center, you take the Cascade Elevators up to the 8th floor and ask at the ICU reception desk to point you to Calin's room. If you have any possibility of illness yourself, please recover first before visiting rather than bring any germs into the ward. Also, as noted before, no flowers are allowed, so just bring your minds' flower (or mind flowers) as Calin requested. S & L will pick up a guest book (which Calin confirmed in writing should be one of the hand-bound ones from Port Townsend that they sell at the Elliot Bay Bookstore). This should be on-hand and feel free to write notes in there to help Calin remember who visited and help us all see that she's got people coming by to keep her in contact with the world, even if she's a bit sleepy sometimes. We'll also collect her scribbled notes tucked into the book because they'll be funny to look over with her after she gets well. She will be given drugs that may cause amnesia and so she may not remember this time very well.
A few more details on what's going on. The PCP pneumonia was identified from the lavage (squirting liquid and sucking it back) done as part of the bronchoscopy . This pneumonia is much harder to deal with than the other kinds and the process of getting over it and having the lungs heal from the damage of knocking the disease is expected to take at least a week or two. At the 40-50 breaths per minute that she was doing on 100% oxygen, the doctors that her lungs could not hold out too much longer. And if they got tired then there was the potential to have her brain go without oxygen and in the words of one doc, she might no longer be the Calin we know, even if she did make it through such an experience. The ventilator, on the other hand, takes over the effort of moving the air in and out and allows her to take slower deeper breaths than she could on her own. Calin was presented was a clear list of benefits and a frank list of dangers associated with going on the ventilator. Calin then let the doctors leave the room to discuss with the family. We all said a few words and then Calin said, "Let's go for it."
This morning, she was tolerating the ventilator so well that she was allowed to be less sedated, but we were all told that if she starts to struggle with the breathing aparatus or the tubes then she will be given enough sedation to make it comfortable. This can include drugs that will temporarily paralize her to keep her from struggling. Thus, if you visit, please do not be disturbed if she is not able to communicate directly to you. This does not mean she won't be able to hear or benefit from your words or presence, however.
The combination of the cancer in her lungs and this bad type of pneumonia is quite serious. The doctors think she has a chance, though, so please do what you think will make that chance turn out for the best. These are good doctors, who Calin and I trust very much. She also has a full time nurse dedicated exclusively to watching her and helping her feel comfortable and feeding her brown goo through the nose tube. The nurses we've met so far have been great. They can also probably help visitors know what's going on if you have questions.
I've got my family in town who are helping me out with a variety of things, so the best assistance I could ask for from you blog readers is to keep Calin in your thoughts and heart and help each other help her.
1 year ago