By Naomi Ishisaka –
It was an eventful day today at the ICU. It was so long and eventful that we are just now getting a chance to update the CaringBridge.
The day started with our carefully planned but poorly executed “sedation vacation.” The sedation vacation – which the doctors would like to happen once a day from now on – was the source of a lot of apprehension for us, as we knew it would create great distress and agitation for Dad. We arranged for Mom and Aunt Carrie to be at the hospital before 5 a.m. (the scheduled time for the vacation) so Mom could be there to ease him into consciousness. We followed the advice of Wendy from the SSW on how to do this with the least harm to Dad. We talked to the staff and made sure they were all aware of the plan for Mom to help Dad with the vacation.
Mom and Aunt Carrie showed up as planned before 5 a.m., but by the time they arrived, they had already done the vacation but it was stopped within 10 minutes due to his great agitation. Needless to say we were very unhappy that the plan had not been followed and were very frustrated.
But we knew that later in the morning we were to have our “Family Conference.” The Family Conference is a meeting they do between families of people in the ICU and the doctors, nurses and support staff who are caring for them. We made the vacation procedure the top topic for the conference. Before the conference we had a great discussion with Jessica, a Clinical Nurse Lead, whose role is to be a liaison between families and the medical staff and to be an advocate for families. She was absolutely wonderful and immediately came up with some great solutions to ensure that our wishes for how to handle coming out of sedation were followed.
During the family meeting we had the opportunity to ask Dr. Nevins, who has been Dad’s doctor during the days this whole week, all the questions we might have about Dad’s condition. Dr. Nevins also gave us his assessment of where Dad was at and what the future might look like.
Dr. Nevins take was:
- It was good that Dad’s left lung was largely clear of fluid
- It was good although not a huge victory that Dad’s white blood cell count went down to 15,200 from 16,000 since yesterday
- It was not good but not necessarily horrible that Dad’s right lung had fluid in it
- It was not good that Dad was net positive 19 liters of fluid since he came to the hospital, this creates an additional burden on Dad’s body
- It was not good that Dad needed more additional oxygen to stay at the same level of oxygenation than he did before
- It was not good that the infection he has is MRSA, it makes everything more difficult to address
- It was not good that Dad has ARDS (acute respiratory distress syndrome) now in his lungs
- It was not good that Dad continues to have low blood pressure
- It was good that switching to Propofol seems to be making Dad more deeply sedated and less agitated
- We need to be aware that Dad may not be able to successfully fight on all these fronts and get better
- We need to be aware that even in the best-case scenario, Dad will be facing:
– 1-2 additional weeks in the ICU
– 2-3 additional weeks in the hospital
– 2-4 weeks in a skilled nursing facility
We also talked at length about our desire for how we wanted to have the staff handle the sedation vacation and other situations where he may wake up from sedation. Dr. Nevins apologized profusely for the fact that the night crew did not follow the procedure and timing we agreed on and Jessica suggested we write up our directive on a piece of paper that hang in Dad’s room so everyone is aware and it is codified. Dr. Nevins also agreed to have the vacation begin at 5:30 a.m. vs. 5 a.m. to give Mom more time to get here. Jessica, Jennifer from patient relations were wonderful to us and Dr. Nevins ensured that our wishes would be followed. We are very grateful for their support and advocacy on this.
Today Dad was very similar to yesterday. Still intubated, but more often unconscious than yesterday. He still wakes but less often and with less determination to remove the tube.
A few misc. developments:
- Sue Sohng is back from Korea – yay! She came directly from the airport and we are so grateful.
- Malkia is now here from Oakland – yay! This will be a huge help to have her here.
- While Virginia Mason is no longer subsidizing our hotel, we were able to reserve a room at the Virginia Inn here at least for the next three days (they are totally booked after that) and will be looking for a room nearby after that. This is a big relief. This allows someone (so far, me) to stay within seconds from the ICU in case something happens at night.
- Naturally we have had a great response from the SSW community regarding our questions on communication for people with intubation. In addition to our visit from Wendy and our advice from Uncle Bruce, the SSW folks sent some great articles on the issue. Link 1 Link 2
We didn’t coordinate too well tonight so here’s Toshi’s report too:
- Dad has developed an inflammatory condition in the lungs called acute respiratory distress syndrome (ARDS).http://en.wikipedia.org/wiki/Acute_respiratory_distress_syndrome This is the major threat right now
- There is evidence of new infection in the upper part of both lungs.
- Dad’s blood pressure and oxygen saturation levels are still not well controlled and tend to fluctuate wildly after trauma.
- Dad is not waking often today. This is most likely due to the use of the new sedative. When he does wake, we are calming him by getting him oriented to his situation. He calms visibly with information.
- It has been confirmed that the sepsis and septic shock were caused by Methicillin-resistant Staphylococcus aureus (MRSA)http://en.wikipedia.org/wiki/Mrsa.
- The diuretic has reduced Dad’s edema significantly and his kidneys are processing this additional fluid load well.
- Dad has developed a grade 1 pressure sore on his back. The medical team promises to be more aggressive about turning him to prevent further pressure sore development.
Comfort and maintenance
Heart rate is very high, Dad has been tachycardic in the past couple hours. He may have also had another small heart attack and lab tests are being run to investigate that.
Dad’s oxygen saturation levels are ok right now (he is getting enough oxygen), but the acute respiratory distress syndrome (ARDS) that has developed is a major concern.
Dad’s temperature is normal or close to normal.
Dad’s heart function is still abnormal.
Both of Dads lungs show signs of new infection. Staph has been identified in cultures, but the specific strain of Staph is not identified. Whatever the strain is, is should be adequately treated by the cocktail of antibiotics Dad is on, additional to the vancomycin being used to treat the MRSA. A broncoscopy was performed on the upper right bronchi but we do not know the results of the preliminary tests yet. Cultures of the fluid sampled will not be available for several days but a white cell evaluation should be available soon.
Dad’s kidney function is good.
Liver enzymes are somewhat off, but this is not a source of concern for the medical team – the liver has a remarkable ability to regenerate after minor injury.
Dad has developed a grade 1 pressure sore on his back. The skin is the largest organ on the body and pressure sores are an enormous risk to bedridden patients. The medical team will be aggressive about turning him to prevent further sore development. The additional movement will cause Dad trauma, but that trauma is preferable to continued skin compromise. Our goal is to have a loved one in the room with him for every turn.
Cultures of the emergent infection in Dads lungs show Staph bacteria, but not the specific strain. The specific strain should be known to us in the next couple of days.
Electrolytes (Potassium, Magnesium, etc) levels are adequate (this helps his heart and circulatory system function properly).
Dad’s monocyte levels are still high, but a little lower than yesterday. The medical team is looking at overall trends rather than day over day results.