Both of my sons lung function has decreased, and the younger of the two (14) had pneumonia last fall. The pulmonologist is adament about having the boys trach'd soon. The boys, while not ready to call it quits, are resisting the immediacy of the surgery.
I could use anyone's advice on how the surgery went for you if your child opted for it, or other alternatives you used to prolong not getting the surgery.
We use bipaps at night, and have a cough assist.

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Susan Robertson said:
My sons are Aaron 19 and Andrew 23, neither is trached, neither have had pneumonia, both use bi-paps, my 19 year old went into respiratory distress last year in June 2008, we had two options, go to hospital with the possibility of being trached or Hospice/Home Health, we choose hospice because at first we did not really know what was going to happen to Aaron, he went from using the bipap only at night to 24/7 in a day, he had been getting more tired and had a cold a few weeks before that and I think it just caught up with him, he is not on hospice care anymore, but we have home health come in every week and they provide pallative care and he is doing good, he uses a avap 24/7 with oxygen, my son did not want to be in the hospital or be trached, I tried working with the pulmonologist we had and get him on a LTV, but it has not worked out, my sons and I have decided to try another pulmonologist that a few DMD patients have been going to and some use the LTV non-invasively, and I am hopeful it will work out this time. You will know what is right when making such a tough decision. Good Luck.
hi ,
was wondering how your boys are doing i was going through disscusion and i found yours about the desicion about to trach or not have they treid the niv via sip vent my son is 23 and has used this method for 3 yrs and has had great sucess with my son has a job he goes to 2 days a week we go to high school sports and this vent has just allowed him such freedom well i wont go on anymore if ya need any infor or just share you thoughts ar question id love to chat sometime

Diane Spiess
Hi Diane,
Everyone provided a lot of great information for us to use and think over prior to going to the pulmonologist.
I was surprised that in spite being relatively young, he had almost no knowledge of NIV sip venting. We continue to work to get this equipment.
In the mean time, Andy uses his bipap a little more during the day and Mike just got his for at night. We also continue to utilize a cough assist for breath stacking and keeping them clear. 4x per day for each.
Both guys decided against getting trached on their own for now. They did really well explaining themselves to the doctor. Both are huge advocates for quality of life and the doctors descriptions of what they would go through to pre-emptively get trached and vented did not fall within their defininition.
Their numbers really stink tho. Their VLC (Vital Lung Capacity) was down to 15 and 17 respectively...ouch! Not much room to get worse. So, we continue to work to keep them healthy and away from colds, infections and H1N1.
Ed
I got trach and vented at the age of 19, currently 24. i understand where your sons are feeling. at first i refused it but honestly a trach is not really that bad. the procedure is quick and simple, i can talk fine, never had infection. im on vent 24/7 with no oxygen. my older bro is the same and hes 27. lots of people feel the trach is a last resort, when really it can open a few doors. aswell if your child needs to be vented by mouth in emergency, with dmd it can get very hard to bend head back to place tube. when i was 19 this happened and nurse gave me cpr and they couldnt get tube in at first, the nurse saved my life

Hi Katherine, This is Adele from Maryland.  First, can’t wait to see Conrad when he comes to DC.  Jason and I are on a cruise starting July 3 and returning on the 9th.

 

Jason is making the change to a vent and using it during the day.  He has been using different face masks, but they all leave sores on his face.  I’ve asked the R/T about the sip n puff, but she brought something like it, but if Jason isn’t taking hits on it, the alarms go off.  What is Conrad using.  I’ve looking on the interned and have not found anything other than your old message on the PPMD site.

 

Adele 

 

P.S will you be here for the PPMD conference next week?

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