Hi Debbie...Best wishes to you and your family! I want to thank you from the bottom of my heart for telling me about NIV. Mitch was recently set up on a non-invasive ventilator. If it weren't for you, this would not have happened.
In our NOrhtern Cal area, NIV has never been used according to doc and respiratory supply companies. It took determination, many phone calls, much research, and hours on the phone to get this NIV system for Mitch. We are in the process of working out all the kinks. Luckily for me, I had help from Ann Avery in Wa. I am in contact with a wonderful, knowledgable RT, Louis Boitano, also from Wa. who is guiding us through this process.
How is Nick doing now that the air quality is better? Those few weeks of smoky, dirty air were quite stressful for everyone dealing with respiratory issues. Mitch stayed indoors, but it didn;t ease my concern. I am keeping my fingers crossed the air doesn't get that bad again, though I think with the draught it is certainly quite a possibilty.
How's the puppy? I imagne all your puppy woes will soon be forgotten as you see the delight on Nick's face! He appears to thouroughly enjoy his pup!
Again, I want to thank you for passing on your knowledge. It;' parents like you that are such a blessing to all of us. Take Care, Heidi
Hi - We live in Alamo, CA near San Ramon, Dublin area. Just wanted to say hi and getting to know some other families in California. Your son is so handsome. I loved all the pics of him...Bless you and your family. Kim
My name is Greg, I am a 38 year old surviver of Duchenne muscular dystrophy. I emailed you because my passion in life is giving support to young adults with (DMD) or other disabilities to live life to the fullest and without boundaries.
I am looking forward to your reply.
My weekend was a pleasent one thanks, how was yours? Nick sounds like me with all that movie watching and video game playing. What video game system(s) does he play? I play Playstation 3 mostly. Tell nick I said hi. Take care.
Hi Debbie, Please pass on my e-mail address to your friend ho is single caring for a 25 yr old son. She may have some tips on BiPAP masks and sip vents. I am having a terrible time trying to find a comopany in our area to help us with the open-circuit mouthpiece ventilation. For one thing, no one seems to know what this is! Another road block is who will pay...we =have medi-cal, but fortunately Mitch also has MediCare because of his father. I was told from Dr Skalsky that son-invasive vents aren't used here in california primarily because medical won't cover them...hard to believe, but true. That's also why many of our doctors never mention this non-invasive treatment. Either they are completely out of the loop regarding alternatives to trachs, or they don't bother because no one wants to handle the equipment. I'm in it for the long haul and will fight this tooth and nail! Thanks for your help. Take care, Heidi
Hi Debbie! My issues with the BiPAP are on -going...I wish I could talk with another mom or dad who is dealing with these same issues. I am extremely stressed, not only because of the BiPAP with the nightly mask issues...it's tough never getting a break. I have no help and it's not healthy. Maybe I will find another parent on this site who is in the same boat as myself. Nice to hear from you! I am in the process of trying to get the so-called sip-vent for Mitch. I was dead on...Mitch is retaining CO2, though his PH is in the normal range. His kidneys are working overtime to compensate. I can see I have a long, hard road to travel before we receive the vent Mitch needs. Take care.
Hi Debbie! Thanks for the nice comment about Jack, he is a very happy guy. . . I really hope he stays that way. I heard you had some excitement in Stockton this week! WOW!! We are hoping to see you this summer! Still planning a trip to hang out by my brother's pool in Morada. :)