It’s good that we didn’t ignore her distress signs and went to the ER on Oct 2nd morning. The infection quickly spread in her bloodstream. In one of our first trips to the ER in June one of the doctors explained that in her situation, i.e. low WBC, an infection in the blood stream can be fatal in a few hours, if not treated quickly. That is exactly what happened on Sunday. The infection started somewhere in her body and quickly spread into the bloodstream. We were in the ER when things started going crazy with the drop in BP, spike in fever and high heart rate. That’s when the ICU team took over and stabilized her BP as low BP could have quickly led to multiple organ failures. Monday and Tuesday showed signs of progress and even the ICU team commented that they might move her out of the ICU in a day – the only issue at that time seemed to be her need for extra oxygen. Tuesday night and Wednesday night were bad. She had body aches, spiked a fever again and had increasingly more difficulty in breathing.
Thursday Oct 6th morning she had 102.8 fever, was breathing very heavy and was disoriented. The doctors said that the infection looked much more severe compared to two days ago. There seemed to be increasing fluid around her lungs and that could be contributing to the breathing issues. They wanted to put a tube near her right lung to drain out the extra fluid but were afraid that she’ll not be in a position to breath herself during this procedure and afterwards because of her deteriorating condition. They decided to put her on a breathing machine.
I was perhaps more scared on Thursday morning than the day she was diagnosed with Leukemia. The diagnosis of cancer came with a positive narrative of ‘we know how to treat this’. There was no such comfort this time. The best the doctors could say is ‘we’ll have to wait and see how she reacts’. You never want to see a loved one unconscious and relying on machines to keep them going.
Last night (Oct 6th night) she woke up a few times as the sleeping meds wore off. She was very aggressive and trying to free herself. Her hands are tied down, but she put up a good fight. She was able to hear me and see me directly a few times but was not calming down. Her eyes were looking around trying to understand where she was, her hands trying to free herself and her mouth and tongue trying to remove the pipes in them. She could not talk as the mouth is stuffed with pipes, but she was clearly saying what is all this, there is something in my mouth and throat, free me, help me. She was very stressed and they increased the sedatives to calm her down and make her sleep again.
The bacterial infection she has is called Methicillin Sensitive Staphylococcus Aureus (MSSA). This is treatable but she currently has zero WBC to put up any fight. Antibiotics will help but usually the body also participates in the fight, which Rachana cannot. The doctors are also trying to give her a type of WBC called Granulocytes, but that is a long process. They first have a find a matching and willing donor, the donor has a take a steroid for few days and then WBC are extracted from the donor and given to her. This is repeated over 5-7 days as the WBC has a very small life span of about 6 hrs. So even if they give her the WBCs, they join the fight against this infection for a few hours. A WBC transfusion like this comes with side effects so they have to weigh the risks and rewards. Right now the thinking is if she show signs of improvement in the next 2-3 days they’ll not do the Granulocytes infusion. They are also expecting her body to produce blood and WBC in the next few days as the infection reduces. She is receiving daily shots to increase WBC production.
Here are some things the doctors are monitoring
- The drain from the lungs has already pulled 400ml of fluid. They will keep this going and also do x-rays to monitor clearing of fluid around the lungs
- The x-rays and other scans show pockets of infection in her lungs and they will monitor that to see if the antibiotics is helping there
- Every day they will try to wake Rachana up (by reducing the sedatives) and try to keep her calm to ensure she is neurologically stable. They want her to be aware of her surroundings and be awake at least once a day.
- The medical ventilator (breathing machine) show that she is need 60% oxygen to keep her blood oxygen at 100%. It seems a regular room has only 21% oxygen and that is enough for a healthy body. So they will monitor this number and want to see it go down. The drain of the fluid and the reduction is the infection will probably reflect in this number. They want to see the oxygen % needed to be under 40% (currently 60%) and PEEP (another pressure number) to be at 4 (currently at 8). When the numbers are there, they will do a test called SBT that will tell them if she is ready to come off the ventilator. It might take a few days for the numbers to be at a point where they do the SBT
So now, she’s stable and not deteriorating. We’ll know in a few days if she actually makes progress.