Given that I am of Irish and Swedish descent, I do have some pagan blood running through me, and this day is usually among one of my personal favorite “holidays”, Midsommar in Sweden. Since we are back in the Bone Marrow Transplant unit, just a few doors down from our last room, we still have an ocean view. The typical June Gloom in San Diego parted at the coast and the sun came through for a few hours while we napped.
We are back on 3 North not because of any improvement but because one doctor was kind enough to tell us that if Gene were to be re-intubated, he would not likely come off the ventilator. So, not wanting to die that way, the decision was made easier to go to “DNR” status, and once that is official, you are not an ICU candidate. No middle ground, the ICU doc said, either “full-code” (all aggressive measures to save your life) or not ICU. He also told me when I asked for some hope that he didn’t deal in hope, just the data. Inter-hospital politics allowed us to remain for a few more days. We spent a 17 day/night nightmare there I think. The last 5 or so I stayed with him all night. It is so so not peaceful. At least on 3 North, Gene is in the hands of tender, loving nurses and staff with whom we’ve built relationship over these nearly six months. He is really still an ICU-needs patient and the staff struggles to meet all his needs.
Nothing has changed significantly since he came off the ventilator on June 4 or 5. I look for small signs that his lung function is improving, like him not “de-sating” ( oxygen saturation in blood dropping) when he is moved, or coughs, or the decrease in the amount of time that he needs both the high-flow nasal canula oxygen at 30 liters plus the “non-rebreather” oxygen mask, and that has improved. He can get by most of the day on just the wind-storm of nasal canula, nights are really rough. Really rough. That is when he asks repeatedly to die, to end it all. His “life” is really hell. He has been bedridden so long that he no longer has much muscle function. He can lift his hands and wiggle his feet and breathe. Most of his life energy goes into breathing, with 100% oxygen being blown into his nose. His liver function is quite compromised and he is very jaundiced. He has “skin breakdown”, blistering, other skin tears, over most of his back, and all of the area from the waist down. His “life” consists of being cleaned which is excruciating with all the skin problems, sleeping in exhaustion from that, being pricked three times a day for the prednisone-induced diabetes and then most of those finger pricks being followed by insulin shots in the stomach. Severe stomach cramps precede bloody bowels that are probably graft versus host disease in his gut or cytomegalovirus. Cleaned again. They did insert a feeding tube maybe 5 or 7 days ago, he seems to be tolerating it, though maybe that is causing the bloody bowels, they don’t know. The word they use a lot is idiopathic which is medicalese for “we don’t know what causes this”. He gets respiratory therapy 4 times a day, just a nebulizer, and has rejected speech therapy to help him swallow for the last 5 days or so, and has rejected being moved in any way to reduce bed sores. They had a high tech bed for awhile for his skin but he didn’t sleep well being moved all the time, and there are concerns about the hydraulics and the oxygen-rich environment. His numbers don’t change much. Lungs and liver are very compromised, damaged, gut is inflamed, skin, well the nurses say they’ve seen worse, but he is seen by a wound care nurse daily, except weekends, when it is a very bad time to be in need of medical support.
He sleeps in the day and is awake most of the night. I’ve been spending the last 7 or 8 or I can’t remember nights with him, trying to comfort and meet his needs that even in ICU were only met if they were extreme. At my point of greatest exhaustion, daybreak, he is most interested in talking and I just am so beyond that I can’t. But I can push my cot right up next to his bed and rub his tummy, like a baby and that shows on the monitor that it drops his heart rate. He is on a good painkiller, Fentanyl, which leaves him pretty cognitively intact but mostly sleepy…..except in the middle of the night. In the night he begs to die, but in the few hours that we can talk somewhat clearly during the day, he is not as sure, asking me what I think.
The ICU team was all for hospice and give it up, the oncology docs believe that because he has been strong enough to survive this long that he has a chance of making it through this valley of death. I am desperately torn. I have had hospice consults the last two days. I think if there is no change in the next few days, and if Gene wants to give up the fight, then I will begin facilitating that process. We both pray for some sign that things are going up or down and it all remains the same. He actually no longer has energy to pray aloud. He has been anointed three times, the most recently by a Catholic priest, Msr. Sheheen, I guess it is no longer called Last Rites but it was comforting for Gene, as was his visit with an Episcopal priest, Chris Chase, who used to be my mom’s priest in Tenn.
The visit while still in ICU, from his nieces, Christina and Bobbie and sister, Emilia, also felt supportive to him and definitely to me. My sister Esther covers the home front and hospital respite for me. Friends continue to provide whatever support can be offered given where we are…..food and errands, Breezy care.
I told Gene two weeks ago that he did not have to hang on for me, that it was between him and God. And that has provided me some solace, but yesterday I realized that it is not really completely truthful to say that it is “in God’s hands” because he is basically on life support, except for breathing. If the nutrition and infection control medications were removed…..then it would be completely in God’s hands. And the doctor told me that could be hours, days or weeks till an end. So, no answers.
Because his liver is not working well, the Fentanyl builds up and he has become less and less responsive, making it harder and harder to discern his wishes…..though in the middle of the night he makes them loud and clear. It does not seem likely that he could come home, though that is what he wants, given how acute his situation is. I’m still trying to get a grasp of what the interface of hospice and hospital “comfort care” is. Although there is a hospice facility, I cannot imagine the trauma of moving him, and he has so many loved caregivers at the hospital. But once we sign on a Hospice company, it may mean that after a time he needs to be moved. In any event, he would remain on oxygen and pain medication.
And, the prayers and hoped for miracle could come at any time…..he is just suffering so so much, how much longer can he be asked to live like this if there is no change? The thin thread of hope and the thin thread of life are still intact. And already, the daylight begins getting shorter. We have been crossing this valley of the shadow of death for so long.
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