Hi everyone. My mother (aged 78) is currently battling sepsis and we are all so scared. She went in for a “routine surgery” to remove part of her bowel that had pre-cancerous cells. The first surgery resulted in a blockage requiring a second surgery where they found a puncture wound, a hernia perforating the bladder and an area of the colon that had no blood flow to be removed. Post surgery she went into septic shock. Her kidneys, liver and spleen shut down. She was in a medical induced coma for 2 weeks.
When she started to come out of it, we put a trach in, but she got another infection. 2 weeks later she seemed to turn around. She now has an abscess in her abdomen that has caused another infection.
They have put drains in, but her blood pressure keeps dropping and her infection is not going away. We are all so scared as the days count on (day 31 and counting).
Written by
WorriedFamilyCDN
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Your Mom has got this far, hopefully she has got the resources to fight this infection off too. Many of us here have survived seemingly hopeless odds. I was in a coma for 57 days & in ICU for 90.
Unfortunately it’s a fact of life that there is very high risk that you will contract infections when in ICU. I had open heart surgery, caught pneumonia, sepsis and a range of other infections. I’m 73 and survived but it was a struggle
I went through almost identical experience with my own mother who was of the same age.My mother underwent surgery beginning of Jan2017, she aquired a surgical infection which resulted in her being placed in an isolation ward for 4 months.
There was a constant struggle with the infection, although a DNR was in place, it got to the point where it was suggested I contemplate the termination of medical care and move my mother to palliative care. It was estimated my mother could probably survive on medical care for about 3 weeks, or on palliative care - under a week.
There were multiple specialists involved in my mothers medical problems at the time - these included a cardiologist, vascular surgeon, nephrologist, infection control specialist, plastic surgeon, orthopedic surgeon, general physician and critical care physician.
At some point I realized there was a communication problem between all the doctors.
Fortunately I have a medical qualification and am able to understand the pathology reports, various doctors notes to each other, patient monitoring equipment etc.
The first thing that triggered me was concern by the nursing staff that my mother was hardly eating - and refusing meals. Then, soon after, her favorite doctor (the vascular surgeon), told me my mother would pretend to be asleep when he visited her during ward rounds - and she was very fond of him. The plastic surgeon wanted to operate, but my mother's nutrician (specifically protein & prealbumin levels) were far too low to operate, the risk of her not surviving further surgery was beyond acceptable levels.
It became very apparent to me she had slumped into a state of depression and therefore was pretending to be asleep, and also refusing meals. This in turn was causing nutrition problems.
At this point given the desperation of the situation, I decided to micro-manage her treatment. The first thing I did was bring in a psychiatrist (many anti-depressants have the side affect of increasing appetite), thereafter, a nutritionist.
I then called a meeting with the general physician, nutritionist, hospital nursing services manager, hospital general manager - and the chef.
A diet plan was formed (high protein meals), which included high protein food and drink supplements (protifar powder, fortisip drinks etc. This was for meals and drinks during the day. At 8pm a feeding tube was to be used through the night until breakfast the next day, then meals and drinks would resume, and at 8pm switch over to the feeding tube again.
Within a few days her protein and prealbumin levels started to increase, and infections markers decrease (blood tests were carried out at 9am & 9pm daily.
At around 10 days later the nutrition had got to the point where the surgeon was happy to operate. 2 hrs of very late night surgery and infected tissue was removed.
My mother was discharged two weeks later.
I was both relived and happy, but at the same time very angry. My mother was in a new hospital, one of the best in the country - the hospital has the best and latest equipment - from mobile ECMO units to DaVinci robotic surgery. Her doctors were without doubt, amongst the most highly regarded in the city - and despite all of this, nobody was able to see the wood for all the trees.
The very best advice I can give out of my personal experience, is watch everything like a hawk, keep talking to the various doctors and nursing staff (sometimes the devil is in the little missed details that are not communicated). Nursing staff in the ward are key - these are the people seeing and watching over your mother all hours of the day and night - don't dismiss their opinion against that of a doctor. Nutrition is key - protein forms the building blocks of our system, infections deplete protein levels very quickly rendering the body unable to sustain itself while simultaneously fighting infection.
Make sure you get sufficient rest and nutrition, your own strength is critical in advocating for your mother - you need to be in top condition to help fight her battle.
I keep hearing ICU is the best place for her, but then we struggle with turn over of doctors and nurses who seem to either want to repeat details or not give us any at all. I know ICUs are long hours, but starting to do the same with my mom of micro managing the treatments and communication. Thank you for sharing your story as I was starting to feel like I was getting the opposite treatment as everyone else with ICU. You’re right…it requires watching it all like a hawk to ensure she is getting the attention needed. And a great reminder to take of ourselves along the way. I am starting to worry her nutrition is not enough so something I’m definitely going to be asking about. Thank you so much
Be specific in asking about protein and pre-albumin levels in blood tests. Right now there is a good chance focus may be on infection markers and other blood chemistry post cardiac surgery. Checking nutrition levels may require separate tests.In my mother's case, the nutritionist requested a separate pathology report on nutrition, not to be combined with the regular reports out of the path lab.
Sometimes it may be better to separate reports to avoid a wall of text and graphs.
ICU doctors want to get their patients out of ICU as fast as possible, every transfer out of ICU indicates success . If they feel its the best environment for your mother right now, trust that judgement. Unlike a general ward, ICU wards are fully equipped and staffed for any unexpected emergency.
Its so important you keep your strength. ICU is an unpleasant environment with a roller coaster ride. Many up's and many downs along the way.
When you speak with the doctor, it is often difficult to remember all your questions . Therefore, writing down questions and concerns as they arise can be helpful . Here are some commonly asked questions:
• What is wrong with my loved one? (What is his or her primary diagnosis?)
• Are there other medical issues that are important right now?
• What is the treatment plan?
• When do you expect to see a response to treatment?
• What changes will you be watching for as a response to the therapy?
• What are the risks of the therapy and/or medications?
• How do you expect things to go in the next 24 hours?
• What is the best possible outcome? Worst possible outcome?
• How will this condition affect my family member’s long-term quality of
life?
• What types of medications is he or she receiving?
• Is the patient in any pain?
• What is being done to ease pain and fear?
• How is nutrition provided?
• How long do you think my family member will need to be in the ICU?
How often should I get information?
In general, daily discussions with the critical care team allow for an update on the condition of your family member and the treatment plan . If an acute change or event occurs, you may need to speak with the doctor more frequently . The bedside nurse can keep you updated about events of the day as well as clarify information . In addition, it is often best to have one or two members of the family serve as the spokespersons . In case of difficult decision making or confusing information, the nurse can often arrange a family meeting to discuss the issues with the medical team .
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