Friday, September 21, 2007

yesterday the saliva storm waited until precisely 730 pm, when my wife arrived home with two tired kids. the night helper having warned of being late. they needed her, but rarely obeyed. for 90 minutes, she dealt with my constant need for suction. she did well. i thank her.

Howdy, BH. This is brad here, regina's husband. regina has been keeping me abreast of some of your postings, and when she said you were worried about the the possibility of a ventilator, I told her I would be glad to share our experiences of the last year. regina also tells me that you've been living with a feeding tube. I have found the vent experience to be analogous: you dread it and fear the unknown, but once you're used to it, it's not such a big deal and you realize the the folks who said better to do it sooner were right. If your current pulmonary problems are due to constantly aspirating oral secretions into your lungs, you will be amazed at how the non-fenestrated trache tube puts a stop to that problem. regina was constantly coughing and choking on mucous, up to the point a year ago that she developed severe pneumonia, landed in the hospital barely able to breathe, and assented to being intubated. The throat tube was very uncomfortable, and our pulmonologist advised us that regina would be much more comfortable with a tracheostomy. We took her advice, and it wasn't long before regina had regained all her pre-pneumonia functioning, with the exception of no more choking on mucous. It can't drain down past the trache cuff. Of course, we have to suction her mouth periodically, but we were doing that before, but less effectively. regina was able to ween from the ventilator in the hospital, which was a little tough due to the compromised functioning of her lungs. That is why it might be advisable to look into making this step before you get a serious lung infection. regina had been sleeping on a Bi-pap machine, before. The situation after we got out of the hospital was similar: She was able to function breathing normally off the vent during the day (while seated in her chair) but we used the vent at night or when lying down to rest. The vent is a very positive and sophisticated device, and inflates her lungs to preset volumes and rates, while responding to her natural breathing rythyms and rates. It didn't take long to get the hang of operating it, our medical goods supplier is very good at providing training and keeping us stocked with supplies. We were able to get our caregiver trained, and she is a country girl with no special medical skills or education, just willing to learn. Our goal when leaving the hospital was simply to get regina back home. I think we were all surprised to learn that she could resume her usual routines, continue her artwork, enjoy the critters and the yard, travel a bit and visit friends, all with the support of the vent. Vent care is fairly simple, there is tubing, filters etc. to change periodically. regina requires periodic suctioning of the lungs through the trach by way of a 'Ballard' device, easy to learn. The supplier checks all our stuff monthly and replaces doubtful equipment. Our care for regina is also not that much different from before. The vent allows her to get reasonable rest, and moving her around in the bed is just a little more involved due to the vent tubing, but really not difficult. One thing that has changed is that I do not leave regina alone on the vent without a baby monitor so she can signal me if there is a problem. I don't think she should be left while on the vent because her airway is occupied by the tubing, and if the vent should fail (very unlikely, hasn't happened yet) i don't think she could get adequate breathes through the tubing. The vent's portable, (sometimes mounted on the chair back, or in the car) we have backup equipment, the batteries (and generator) have enabled us to make it through extended (several days) power failures. Our supplier told us of one patient, who is otherwise healthy despite his pulmonary failure, who puts on his backpack vent every day, grabs his 12 hour battery pack, and heads off to work operating heavy equipment. Other stories include a local kid who headed into town in his chair, had forgotten to fully charge his vent battery, and had to bag himself all the way home (good thing he remembered to bring the bag!) It is kind of amazing the things you can learn when needed. All of us who are involved in regina's care are proud of what we've been able to accomplish to allow her to live the quality of life we would all want if we were in your situation. The thing is, if you are going to be on a vent, the technology is so advanced now that living at home is not only possible, but quality of life alone makes that choice obvious, never mind the greatly reduced cost compared to an advanced care facility. What is needed is a group of dedicated caregivers who support each other while they support you. We are fortunate to have that, but it takes work to make it work. The sacrifices are worth it. Feel free to ask more specifics, or have your folks contact me at ...
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