Last night and this morning were very bad. The sedatives were not effective as she was awake a lot and agitated through the night. She was pulling her hands, straining her head, upset, afraid, fighting, crying, trying to break free, trying to say something while unable to talk, and looking at nothing in particular all the time. It was very upsetting to see her this way. We tried to talk to her and calm her down but she was in some mid zone of not sleeping nor being awake and was perhaps able to hear us but could not understand what we were saying. They only way to stop her was to put her back to sleep and the sedatives were being ineffective most of the time. This happened pretty consistently till around midnight and then things seems to slow down but not go away. The ventilator was cranked up to push 80% O2 to keep her stable, compared to the 40% setting from the earlier. The sedatives were also increased.
My hope is that she does not remember any of this when she wakes up. I can only imagine what nightmares she is visualizing while she struggles. I can see it in her eyes that she is imagining all kinds of horrors, it’s not just a reflexive movement of her hands and head. I asked the doctors about this and they say it’ll be just like she is getting up after the long sleep,but I’ve also read about PTSD as a possible side effect for patients who have had prolonged stays on ventilators.
Around 6am her temperature climbed to 102.5 and that started another 4-5 hours of pure chaos, fear and emotional helplessness. The nurse from the night shift was not helpful at all and was doing things like a chore with no empathy. The shift changed at 7am and the new nurse was god sent! She quickly recognised that Rachana was burping and had a bloated stomach and hooked her up to a rectal catheter fearing a breakup of her skin from the diahrea. This almost instantly calmed as she immediately relieved herself. She’s been tube fed some liquid diet which could be the source of this indigestion. God knows what pain and discomfort she suffered because of this last night. The doctors also saw accumulation of fluids around her lungs and flushed the drain catheter hooked to her right chest to find clot that had stopped the drain. The removal of this clot quickly cleared up around 120 ml of fluid from her chest. These two things gave her immediate comfort and she started to relax a bit. Later in the day she again showed a fever of 104 and that started another round of activity to control it,which ended in a late night CT scan, whose results we’ll hear about tomorrow. She was also hooked to a ‘cooling blanket’, which is basically 4 large flexible mats that are wrapped and glued to her chest and legs and connected to a machine which circulates temperature controlled hot/cold water to maintain her temperature.
Unable to say anything, she relies on us to figure out what discomfort she’s in; and we rely on the medical team to find these causes and make her comfortable, while providing emotional support. The medical team is also at a disadvantage as there can be any number of things that can go wrong and they have to find the needle in the haystack. The rest of the day went very well as she was sleeping relaxed and peaceful. They changed her sedatives to a different one which put her into a deeper sleep (so she does not wake up and get agitated), gave her a unit of blood, which probably also gave her a little bit of energy. The doctors sent her stool sample for infection tests, which came back negative. They did a CT scan later in the night and we’ll know tomorrow if this difficult day was because of the digestive issues, the clogged chest fluid or something else.
I counted; she has 24 wires, pipes and catheters connected to her, had more than 10 blood and fluid tests, 3 x-rays and a CT scan in a single day, was visited by 4 separate teams of doctors and their assistants, had 4 antibiotics, a pain medicine, a sedative, IV fluids and other tablets given to her just today, and we all still played a guessing game to help her.