EMERGENCY MANAGEMENT
The first page of the three-holed binder we used for our nursing information, charts, and shift reports has had a list of instructions–and telephone numbers–to assist rapid decision-making in the event of an emergency. We have discussed a few scenarios with the staff. Rapid onset of respiratory infection and fire are the two paramount risks. We choose nurses who are strong enough and well enough to drag Tina out of our home on their own in case of a fire during the few hours a day I am typically not at home.
Most critical is providing two paths for air flow to Tina’s lungs, so that if one is blocked, she still gets air. The tracheostomy tube that goes into her throat is curved, so that it extends downward inside the trachea (windpipe). Inside it has a small balloon, the “cuff,” like a tire inner-tube, that surrounds it. This means there are two paths for air: through the tracheostomy tube in her throat or around the tube to exit normally from her windpipe to larynx, mouth, nose. Depending on the degree of inflation of the cuff, much, little, or no air flows through the space between the cuff and the inner wall of the windpipe and on to larynx, mouth, nose. Full inflation seals the cuff to the wall, keeping any fluids, such as saliva, from flowing into the lungs, a benefit. Full inflation prevents air from going to the vocal cords, greatly limiting the patient’s ability to communicate. Full inflation means that any blockage of the trach tube cuts off air to the lungs, a dangerous condition. We use partial inflation of the cuff, giving us two ways for air to get to and from the lungs, through the trach tube or around the cuff, somewhat raising the risk of aspiration of fluid into the lungs, but lowering the risk of asphyxiation.
We have tested our ventilators and have assured ourselves that when they are off, Tina can still inhale and exhale through them. Off, they do not assist, obviously, but they are not stopping the flow, a critical concern. They have built-in batteries, and we have back-ups for them, but if some electrical fault should cause them to stop, Tina could still breathe.
In various places around our house are stored plastic gallon jugs filled with tap water. We usually drink bottled water, as our well water is mediocre. When we lose electrical power, and even when we fire up our gasoline-powered generator, we do not have electricity for the well pump. Water for cleaning and flushing quickly becomes an issue. We once had a 95-hour (four-day) outage, when our gallon jugs were very useful.
The gallon jugs of water could be useful against a very small fire, and we have fire extinguishers in each kitchen, by each exit door.
PAIN MANAGEMENT
Before her near-death exacerbation and aspiration pneumonia in the spring of 2004, Tina rarely complained of any pain associated with MS. This MS exacerbation that cost the remaining use of her arms and hands and nearly cost her life also left her with painful contractures of the elbows and wrists.
The primary doctor at the hospital active in her care, Dr. Richard Walker, an internist and pulmonologist, agreed with me that we must give her protection from this pain, as it made moving her for in-bed care traumatic and threatened her will to live. The solution was morphine, and I was adamant that she be given enough, even if risky, to protect her from pain. He agreed.
For seven years now, we have been able to shield her from that pain. In a few instances, a shortage of morphine or an oversight has left her unprotected. The resumption of that pain proved the need for the continuing pain coverage.
Morphine sulfate solution became harder to get in 2009. We switched to morphine sulfate pills, water soluble, thus also capable of administration through the gastric feeding tube. We hadn’t realized they would be half the price of the liquid. Instead of costing us $420 per year, it is $210 per year. Since IBM pays four-fifths and we pay only one-fifth, the liquid was actually costing a total of $2,100/year; so using the pills instead saves a thousand dollars per year. The other advantage was that the pills constituted one-eighth of the total daily dose, and thus were given every three hours. The morphine solution was one-sixth of the total daily dose, given every 4 hours. More frequent doses in smaller amounts help preserve a nearly constant level in the blood, and nearly constant pain protection.
Tina gets five other prescription medications at various times of the day and six feedings throughout the day with a balanced nutritional fluid. She also receives cranberry juice and yogurt, along with a host of vitamins and minerals. She is in robust health, needed if she has to fight off viruses, for which there is little available effective medication.
All of this is kept track of with “charting,” listing of each item, its time of ingestion, day by day, the nurses initialing what they have given. A similar set of documents chart the treatments, from bathing, to diaper-changing, to care for the gastric tube site to care for the tracheostomy site, etc.
Frequent monitoring of crucial vital signs—blood pressure, pulse rate, blood oxygen saturation, heart rate, respiration rate and volume—has helped us catch incipient infections rapidly. Still, an attack of pneumonia once developed within only a few hours, and we had to call 911 and the emergency medical technicians to rush her to the hospital, forty-five minutes away.
Intravenous antibiotics given through a triple-lumen catheter placed in her upper chest, saved her life. A couple of other times, intravenous lines threaded from her arm to a major vein in the chest were sufficient. The irritation of those veins that occurred at that time means that the next time, we will have to re-install a port surgically. It all gets a bit scary.
Several doctors have told us she has been receiving exceptional care at home. We call it TLC, “Tina-loving care.”
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