The clot brought with it the risk of complications. If the clot were to move to the upper part of his body, it could lodge in his heart, lungs or brain. As he had already coughed up some mucus containing blood, doctors were quite concerned. It was decided that the bleed in the brain was only small and that some blood thinning medication would be the best solution to prevent further clots. So late Friday evening, the first blood thinning medication was administered via a needle. This continued twice daily over the course of the weekend.
As the weekend progressed, Marks condition deteriorated even further and seizures now became a daily occurrence. Nurses who were pressured for time and over-worked, simply didn't understand that rolling Mark over would cause him massive discomfort, cause the blood to rush to his head and consequently cause a seizure. It seemed I was talking to a blank wall when I repeatedly asked them not to lower his head lower than his feet. They ignored me and gave Mark pain medication as they believed he should not be in pain, even though they were the ones who had caused the pain and the seizure.
Monday morning I visited the hospital in my usual routine of taking Sebastian to school, grabbing coffees and seeing Mark. He drank his coffee and I slowly lowered his head in preparation for the nurses to clean him with their hot wet towels. I begged them not to lower his head any further and roll him so far over. But it didn't matter. As soon as they started to move him the seizure came, only this time his eyes glazed over and stayed that way. I talked to him and held his hand, waiting for him to come back, but as the minutes passed, I became more and more concerned that he was not going to return. It was nearly ten minutes before his eyes showed signs of life and I held myself together and took a deep breath. I spoke with the doctors and explained how his symptoms had been exacerbated over the weekend and that I believed the blood thinner was the main cause. I also believe the coffee may have contributed. I demanded that the blood filter be installed to stop the clot from moving to his upper body, as per the discussion last week, and that it needed to be done as a matter of urgency as he had been left, yet again, to wait until "business hours" for anything to be arranged.
Later that day, Mark was transported to the Flinders Hospital and the blood filter was successfully installed and blood thinning medication ceased. But still no word on transferring to Rehab so I started asking questions. One source told me there were no beds while another source later that day, told me that Mark was not medically stable to go to rehab. On top of this, I had discussed with one of the doctors, the use of codine plus paracetamol (Codral Cold Flu tablets) to assist in reducing the mucus that was now causing pressure in Mark's head. Nurses had again started giving him Panadol as he was complaining of headache but when I came in at 9am, I could easily see and hear that he was full of mucus and phlegm again. Doctors agreed that I could supply this medication and it would be given to him at lunchtime. Satisfied that everything was in hand, Mark had been cleaned in bed without having a seizure, I felt it was safe for me to attend College. In my break at 1pm however, I discovered that the medication had NOT been given and when I asked the nurse to administer it, she told me that "I did not have the right to demand he have medication and that Mark had to ask for it himself, which he had not done". Another nurse that same morning had stated to me that "Mark always has a headache just before he has a seizure", as if she knew my husband better than I did.
All these things started to swim around in my head while I sat in my Pharmacology lecture, unable to concentrate on the various types of antibiotics and how they work in the body. My blood boiled at nurse’s ignorance and careless attitude. By the time I picked up Sebastian from school, I had to tell him that we were having problems at the hospital and that I needed him to be patient while I spoke, very sternly, to medical staff, especially when I then learned that there was no hope for Mark to go to rehab this week. It had been 11 days since Mark had been admitted into the Repat hospital. 11 days surrounded by geriatric men, who were either bed bound or had dementia and who were totally or mostly deaf. 11 days with very little physio or activity. 11 days without a shower. 11 days of waiting for someone to give him a chance. As you can imagine, if you know me at all, I lost the plot!
Needless to say, Sebastian witnessed how to fight for someone's rights. How to be stern, angry, yet not yell or be abusive. At least, I hope that is how I came across. I stated the facts, stated my dissatisfaction and threatened to discharge Mark and take him home. Within ten minutes of the conversation, I was offered a private room for Mark, daily efforts to get him out of bed, extra physio and a shower in the morning, so I guess the message came across loud and clear.
This morning (Wednesday), I visited him and he looked very unwell and tired. But then I learned that he had already been out of bed, showered, sat in the chair, had breakfast and was put back into bed again to rest - all this before 9am! The man was exhausted. I told him how proud I was of his efforts and that I understood how hard that was for him to do. He fights on, as do I, however the pain in his head may change his opinion of doing it again tomorrow, but we will see. Mark has always been the quiet achiever, while my presence is usually felt. But we are both fighters in our own ways and we continue to fight each day, each hour, each medical system, until we feel it’s best to stop, which will always be his call. It's not the cancer we are fighting, it's the chance to "give Mark the opportunity to try to rehabilitate, the chance to get better, rather than just riding him off as a terminal patient with a wife who can't accept that her husband is dying." Maybe he won't get better and I accept that this may happen, but while he is willing to push himself, I'm happy to advocate for him, no matter who I rub up the wrong way. While I still see there is a chance, I'm going to push.
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