Daniel has come through a few more minor bleeds and some pretty scary respiratory problems in the past four days. No bleeds yesterday or today though.
The breathing problems involve his trache getting looser because of the tumour, plus the mucus is drying inside the tube liner, the inner canula, because the mask over his trache often gets misaligned and doesn't moisten his air to keep him able to cough up stuff easily. So, they tightened some things and turned up the moisture, and I asked for him to have more regular checks of his canula. It's a work in progress.
The swelling in his face and legs has decreased drastically in the past several days. Daniel is able to see out both eyes again. So nice. Though I was concerned that it was a sign his body didn't have enough volume because of all of the bleeds he's been having.
Daniel's doctor this week is our favourite, Dr. Z, and I was finally able to have a good sit down conversation with him Wednesday morning about my concerns. I'm so thankful he took the time to really listen and interact with my suggestions.
I explained how the conclusions from last week's care team meeting weren't turning out to be what I said we wanted. I once again delineated between ordinary measures and extraordinary measures as Daniel and I discussed a few months ago.
Last week's doctor said she knew that God's answer was that Daniel was going to die soon, and that because when she asked Daniel if he wanted to go to "be with the God," and Daniel had indicated yes, that meant he didn't want treatment anymore; I tried to explain that as Christians we always prefer to be with God in Heaven, but that doesn't mean we give up or have a death wish. I told the team that the answer was misleading because it wasn't a precise question.
I told Dr. Z that if the previous Dr. thinks it's cruel to prolong Daniel's suffering and she can't understand that, one, God is giving Daniel the grace and strength to endure, and two, we are to do nothing to hasten his death including depriving him of simple meds, treatments, etc. that can prevent crises, then she is not on the same page with us and should no longer be put on Daniel's case. I informed the ward manager of this today too. They'll talk about it.
So, I explained to Dr. Z my concerns about Daniel's confusion and inability to communicate well at all, how it's causing distress for him, and using up a lot of energy. (For example, last night he spent 20 minutes writing and rewriting on his phone and clipboard trying to order the letters right and finally got half a phrase somewhat legible, which I was able to ask him about. He wanted to make sure there were no needles in his mattress.) Plus, the agitation has caused the nurses to have to medicate him with anti-anxiety meds a time or two and the extra pain meds he's needed were ruining his bowel equilibrium which required more meds. A downward spiral.
A bit of background: a few weeks ago I noticed more minor confusion in Daniel and asked that week's doctor to give him pamidronate because I know that confusion is a symptom of hypercalcemia. It helped a lot and Daniel even texted me again a few times -- it had been six days since the last text. Dr. Z had then followed up and was impressed with the response, even though the calcium seemed to rise a touch. He said, "I guess we need to treat the symptoms and not the numbers."
I reminded him of that yesterday and said I would like to try this med again to see if it helps. We discussed alternatives and I said because we know this one doesn't seem to have adverse side effects for Daniel to stick with it until it doesn't work anymore. He agreed. Dr. Z said he'd need my feedback to figure out if the med is effective and then if so he's okay with having a weekly order of it.
In light of last week's doctor refusing more transfusions, I also suggested a more conservative option for transfusions as it seemed Daniel would need another because of all the bleeds he's had. I said that the bleeds seem to happen soon after a transfusion so perhaps we shouldn't be aiming for 100 hemoglobin but more like 80, so the sudden added volume doesn't create the outward pressure on the tumour and cause bleeds when he coughs hard, but still give Daniel enough for strength and energy, relatively speaking. That way we can try to avoid the life threatening aspect of bleeds while still giving Daniel the benefit of the transfusions when he needs them. He thought about it and agreed. He said there's a certain aspect of this all that is akin to flying by the seat of our pants. That's one way to put it.
So, he ordered the blood work for the hemoglobin baseline and the pamidronate, which both required of course Daniel get an IV again. It took a few tries again late last night, but the numbing patches helped with the discomfort. And it turns out that Daniel doesn't need a transfusion as he's at 78, which really surprised both the doctor and I.
It's so good to have a doctor who at least somewhat gets where we're coming from (he seems to have at least a Christian background if not more), and that I'm just trying to do the most ethical and moral thing to care for my husband and relieve symptoms and suffering as much as possible while we wait for God's answer, plus respecting God's standard for the sanctity of life, trusting He will continue to sustain Daniel for what He allows.
This morning the ward manager and Dr. Z said they needed to discuss something Daniel wrote during the night. He was just about finished the med IV and spent a lot of time and energy with a lot of agitation writing the word "disconnect." So, the nurse unhooked his IV. The manager and doctor were very concerned whether he was refusing the treatment.
When Daniel awoke from his nap a few minutes later during my conversation with them, I asked. It took a few minutes to get him awake enough to think about what I was saying and then to try and give me clear answers with his hands. Basically, he wanted it disconnected because it was uncomfortable, not because he didn't want the med. I informed the doctor and manager. I have since updated his printed sheet of words he can point to so this can be much more easily communicated in the future.
So, yes, a lot of heavy conversations trying to undo false assumptions from last week's meeting and getting the team back on the same page as what Daniel and I discussed a few months ago.
But a wonderful result God has brought about is during my visit tonight, Daniel spent about a minute writing something and, while still having an extra letter here and a word there, he said he needs me and loves me. Wow, what a blessing! Plus, I'm looking forward to showing that to the doctor tomorrow.
So, a lot happening with a lot of unknowns. All the while I've been fighting a cold, the kids have eye infections as symptoms of their colds (it's not pinkeye as I thought), and Kezia has had a substantial fever all day which has taken a lot more care. In fact, she's coughing now (it's approaching midnight), so I'd better go.
Please keep praying. Thank you. God is up to something. May He be glorified.
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