I am 43, wife to Bob, stay at home mom and caregiver to both sons with DMD, like to read, scrapebook, movies and spend time with Andrew and Aaron.
About my family:
My sons were diagnosed at 5 (Andrew) and 21 months (Aaron), Andrew started using wheelchair at 12 years, Aaron was using wheelchair at 9 years, both have g-tubes, Aaron has had spinal fusion, both use bi-pap w/oxygen at night, Aaron also uses bi-pap through most of day and is receiving support and care through Carousel Pediatrics Pallative Care
Name(s) of child(ren)/individual(s) with Duchenne:
Age(s) of child(ren)/individual(s) with Duchenne:
13-18, 19 or older
Comment Wall (11 comments)
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Let me know the outcome of all this. I hope Louis got you all on the right track. Still haven't heard from Angela, but I bet a bit of detective work could find her easily if you have more questions for her. Was your doc okay with all this, and willing to learn more?
Every guy is different, so I hesitate to give you Roy's settings as they may be wrong for your son. If he cannot make a seal it may be due to jaw misalignment and so a smaller straight tube might work. But you said you tried that. Anyways, here are Roy's settings--BPM 2, tidal volume 850, insp. time 1.3 seconds, sensitivity -1. Please don't give up yet--otherwise the next step is a trach or wearing bi-pap 24/7 which gets old fast. I will get back to you.
Dr. Benditt is Roy's pulmonologist. He should be getting back to you. The RT, also in that video is Louis Boitano. This should only require the merest sip, like sucking on a straw, and not involve the diaphragm muscles at all. Weak muscles is why this was invented! So many pulmonologists are not even mentioning this way of non-invasive venting to their patients which is a shame as this may avoid many trachs for many years. Anyway, I will forward your info to Louis and see what he says. Roy thinks the sensitivity is set way too high. How low did you try? Roy's sensitivity is -1.(minus 1)
Susan--there shouldn't be any but the slightest effort required for the vent to deliver air. Was the mouthpiece like the one Roy has? Many do breathe through the smaller tubes, one guy uses a "dental straw" which I haven't seen. If air is not coming out as needed I would suspect the settings on the LTV. Since your RT doesn't have any suggestions, does his pulmonologist? I think you should e-mail DR. Bach and see what he says about the settings. Or, give them to me and I will run them by our RT who appears on the NIV video from UW. This shouldn't really need any "practice" is what confuses me. NIV should mean freedom to use it gradually until needed constantly.
Susan--besides the pics and narrative you can see on my page, my son added to it under the "technology" discussion section. There he explained the way we have set up his vent now. This is the third variation and Roy likes it so far. Hope we have helped. Ann
Well, guess I was too long winded and it cut me off. Anyway, good luck to your son and maybe he would like to communicate with my son? My son is a host of MDA chat "Wheelchair Gang" on Weds. nights. This dmd thing is hard isn't it?
Just like getting used to bi-pap it will take a bit to get used to volume vent. Is your LTV for both day(mouthpiece) AND night use(mask or pillows)?? We have a v-pap for night and an LTV 800 for day mounted on the back of son's wc. So you no longer have the bi-pap for him to gradually wean himself off of?? Cold turkey is never good. I would call your RT or pulmonologist and tell them of the problems. If he still has his bi-pap maybe he can make the change easier by using both methods and bit by bit get onto the volume vent. I am sure that he will enjoy his sip-vent soon and feel the liberation of having a less sore nose. Good things take time and determination to adjust.
We have alot in common. I am a stay at home mom/caregiver to my son with DMD. I like to read, scrapbook occasionally, spend time with my son, husband and family. I'm also the same age as you. I sometimes feel overwhelmed with one son with DMD, I can't imagine having two. Take care!