Because Curtís progression was so marked, Heidi and Curtis found themselves adapting on a daily basis. They also found that planning ahead was a necessity. When the doctors, or others, spoke to them about the probability of needing certain equipment down the road, Heidi started the process right away, despite Curtís hesitation. Originally, he did not want a cane, a wheelchair, a Rohoô cushion, a hospital bed, an air mattress, a tub bench, a Hoyerô lift, a bi-pap, a suction machine, an inexsufflator, a feeding tube, or an inflatable bathtub. Who would? But, Heidi can not stress enough the importance of planning ahead. Fortunately, their doctors and others were insistent that the equipment be available before it became an emergency. For instance, the lift had been advised, but Curtis refused. He could still stand with Heidiís help and the aid of a powered reclining/lift chair, and he could shuffle from the bed to his chair, and to the bathroom, using Heidiís shoulders as a crutch (he had a walker, but preferred Heidi). During a five day trip to Ohio, Curt lost the ability to stand. Fortunately, his brother accompanied them on their trip, and could thus manually transfer the six foot, two hundred pound Curtis. When they arrived home, his brother had to go back to work, and Curt and Heidi were stuck. A friendly retired neighbor helped, until he hurt his back. Thank goodness the paperwork had already been started for the lift, and a week later it arrived. Now, Heidi could transfer Curtis on her own, and their independence was once again recovered. In addition, a hospital bed had arrived a few days before they left for Ohio, for Curtis could no longer get out of bed with just Heidiís help, so their neighbors or family had be called when Curt was ready to get out of bed. While in Ohio, Curtís breathing became very labored while laying flat. He survived the five days, but was relieved to come home and be able to sleep at an angle and breathe comfortably.
External Respiratory Aid
Due to the progression of Curtís disease, Curtis found himself having extreme difficulty with breathing five months after diagnosis. He could still use his left arm, and eat and speak normally. He did not wish to have permanent ventilation, but agreed to a bi-pap. The size of a laptop computer in width and length, but of a greater height, it forced air into his lungs through a tube and mask, thus decreasing the amount of work that had to be done by his weakened diaphragm muscles. Because it is forced air, though, and not volumized air, it is not sufficient to keep one alive forever. But, the bi-pap added six wonderful months to Curtís life. Initially, the mask bore deep into his forehead, and thus produced a sore that was painful enough to make him refuse the bi-pap some nights. Heidi had their supplier find a mask that he could wear at night, that covered both his mouth and nose and did not touch his forehead, and they would place a cloth (preferably a baby's washcloth) in between the day mask and his forehead during the day.
The use of an AC adapter and battery pack enabled Curtis to remain mobile. With the bi-pap plugged into the battery pack via the adapter, a contraption was rigged to hang on the back of his wheelchair, and thus the bi-pap and battery pack traveled with him.
When Curtis could no longer breathe at all without the aid of the bi-pap, an UPS (uninterrupted power service) system, which is typically used for computers, was bought. With the bi-pap plugged into the UPS, Curtis never had to be without air. This way, the air did not have to be interrupted for the purpose of a transfer, and Curtis did not panic about the possibility of the electricity going out, and there not being enough time to get either the ambubag, or battery pack.
One night, during a terrible thunderstorm, Heidi and Curt realized that if the electricity should go off, the UPS would beep, and it would stay on long enough (they assumed 20 minutes) for Heidi to plug the bi-pap into the battery pack, which had a life of a few hours, plenty of time for Heidi to go outside and start the generator. But, this particular evening, as the electricity flickered, they realized that since Curtis could no longer move his hands, arms, or legs, and his weakened voice could not shout through his full-face night mask, if he could not awaken Heidi with the movement of his head, he would suffocate with her lying next to him, should the electricity go off. Heidi had learned to sleep practically on top of him so that she would awake at the slightest of movements, but there was still the chance she would not. This night, Heidi, Curtís mom, and Curtís friend took shifts, watching the electricity. The next day, after an unsuccessful search for an alarm device, their friend invented a device that rang as loud as a schoolís fire alarm, and flashed like that of a fire alarm for the deaf, when the electricity went out.
Near the end, when Curtis did not have the strength to sit up on a tub bench, Heidi found a great inflatable bathtub. It lays flat on the bed, is blown up in seconds with a wet/dry vac that comes with it. You fill it with water through a spray hose which will then serve as a retractable shower head, that is connected to the sink, and then drop Curt into it with the lift. There is a hose that will drain the water, which can either be set in a shower, tub, or outside. So, Curtis could lay in a bathtub at the height of his bed, and be scrubbed, and rinsed, and then raised by the lift, rinsed thoroughly with the shower head device, and dropped back into his chair. After the tub is drained, the wet/dry vac dries it completely so that it can be packed away. Heidi reports that it was a lifesaver for the month or two that Curtis would have otherwise been subjected to only sponge baths and "no rinse shampooing." But, it does take a lot of time, a lot of energy, and two people. Curt didnít love it, but he looked forward to feeling very clean three days a week.
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