I use this blog to write about my husband’s cancer experience. Recently I’ve broadened it to include my sister-in-law’s challenges post surgery to remove a tumour. Today I write one blog that covers both.
Today started off with my husband withdrawn and non-communicative. Physically he had no real issues, that is, he wasn’t in pain, wasn’t nauseous – he just was not “present” in the way he usually is. We had an appointment in the afternoon and it took all I had to get him ready and out the door to get there. When we got back home I made him a cup of tea and left to visit his sister. An hour later he was exactly where I left him, teacup still full, face still troubled. I wonder about an unconscious connection between siblings.
His sister was experiencing one of the “down” days in this up and down battle of sepsis. Her temperature was up a little and her blood pressure was up as well. When her son had arrived in the morning, he found one of her wrists restrained against the bed rail. How long she had been restrained no one knows but we do know it came off as soon as her son arrived, especially since he noted that it had pressed quite firmly into her skin. The nurse on during the night explained that he’d restrained my sister-in-law because apparently she kept pulling off her finger clip used to measure her hydration. It seems remarkable that in such close quarters and with a 1:1 patient nurse ratio that they would find it necessary to restrain her, let alone leave the restraint on for the duration of the shift. When I was there today they were quick to increase her level of sedation because she was getting agitated and could dislodge something, but during the night they restrain rather than sedate? I don’t understand it and probably never will.
We had a nurse come in and explain some of the challenges my sister-in-law was presenting them with while sedated. For example she continues to chew on the intubation mouth piece and the nurse with us reprimanded her several times about it while we were in the room. She moved the tube around and then suctioned her. I suspect the nurse was trying to reassure us with respect to the level of care but it did the opposite, and my sister-in-law’s blood pressure reflected her objection as well. This same nurse advised us that my sister-in-law tends to get agitated when moved, “she doesn’t like being moved,” she says. Then, in the next instant, proceeds to move my sister-in-law’s arm who, guess what, gets agitated.
So I left the hospital feeling rather let down by the medical staff and one particular nurse. She’d presented me with a new challenge – what and how to tell my husband about his sister’s current status. Somehow though I think he knew and his present state reflects his frustration because he feels powerless to do anything. My husband has done so well with his chemo but can’t appreciate it or won’t until his sister is well. Regardless, the day did end on the upswing when some close family friends dropped by unexpectedly. Was it a coincidence that they stopped by when they did? It certainly did wonders for his state of mind – thank you.
I won’t call these updates “surgery” anymore because we are way past that. My sister-in-law’s condition continues to be troubling. She HAS developed pneumonia and is now dealing with this new problem. She is still septic in her abdomen and is not responding well to the antibiotics she is on. She is on blood thinners, we have been assured, since the risk of a blood clot is a reality.
Today when I visited she had just been fully reviewed by the attending physician, who has ordered another CT for tomorrow morning. The nursing staff had washed her hair and given her a sponge bath and consequently she looked better than she had in days. They had also changed all her tubing and replaced all her lines. She remains swollen from the fluids. The level of mechanical support has been increased for both sedation and respiration. Despite this, her son, who was there (as always) was a bit more optimistic than he has been in recent days. The stress is definitely wearing on him but today he seemed to be cautiously optimistic, exhausted but hopeful. It could be that he felt an affinity with the Charge Nurse on today – Pam, her name is Pam, and she was impressive in her approach, kindness and outlook. We’ve met quite a few of the nurses throughout this ordeal, and they all leave an impression.
One stark reality of today’s healthcare is that most of the staff are part timers – that way the hospital doesn’t have to pay them benefits, it’s a cost savings. It speaks to the potential for lack of continuity in care since the only history the incoming nurse is going to look at is likely the last 24 to 48 hours. For my sister-in-law if we had our way we’d have a dedicated cadre of four nurses looking after her (night/day/weekend); developing a relationship with the family and with her – personalizing this experience. I know some will not agree with this but it’s how I feel. I believe that in some areas of the hospital it should be mandatory that the hospital staff areas with full time members to ensure knowledge transfer, awareness and consistency in approach to care – the ICU is one of these. Use your part time staff in Emergency – where the patients come and go within 24 hours, or even on the Wards; for palliative care, again, use full time staff – it provides a familiar face as well as stability and continuity for patients facing an uncertain and, in some instances, a short future.
Today’s visit to the hospital found my sister-in-law’s appearance relatively unchanged. She continues to be intubated although over the last 24 hours the doctor has commenced weaning her slowly off of the respirator. Today as they reduced her support she picked up the pace quite nicely. Her colour was off, likely the result of exertion since she has been breathing with support since Sunday morning. Her level of sedation continues to be reduced. Her vitals are good and the hospital staff are pleased with her numbers. The bloating in her midriff has started to come down. She still has significant water retention evident in her legs, arms and hands, but all things in time. She is starting to dispel some of the retained fluids, and again, the hospital is pleased with her progress in this area.
By way of a status update – she continues in the right direction, slowly, safely and under watchful eyes.