Heidi Miller
  • Female
  • Citrus Heights, CA
  • United States
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Heidi Miller's Friends

  • Moein
  • Cheryl Markey
  • Christina
  • Diane Spiess
  • Gregory
  • Janet Moses
  • Robyn Hoffman
  • Mitch
  • Tanya Fleming
  • Tonya
  • Deb Robins
  • maxine Strydom
  • Colin McKenzie
  • Susana Arroyo
  • Debbie Fish

Heidi Miller's Discussions

Ventilators

Started this discussion. Last reply by Donna Sep 9, 2008. 3 Replies

Idebenone

Started this discussion. Last reply by Joshua's mom Jul 27, 2011. 23 Replies

 

Heidi Miller's Page

Profile Information

About me:
Hi! I am a 49 year old single mom with 2 sons, Brett, 18, and Mitch, 23. Mitch has DMD. I feel I have much to offer others in our life situation; on the other hand, I would love to have a group of people I can talk with. Now that Mitch is older, we have new problems to encounter. Every step of the way, every single day of our lives, we need someone who understands; someone we can talk to and open our hearts to. I am looking for that and hope I have found just the place.
Name(s) of child(ren)/individual(s) with Duchenne:
Mitch Ball
Age(s) of child(ren)/individual(s) with Duchenne:
19 or older
City:
Citrus Heights, CA
On Aug 11th, our lives changed forever...Mitch was scheduled for G-tube placement due to the high risk for aspiration on Aug 8th. The surgery was re-scheduled by the hospital for Aug 20th. On Aug 11th, Mitch aspirated and had to go by ambulance to the ER. I immediantly used the Cough Assist machine to save his life (if you don't have one, get one), and called 911 at the same time. The hospital we had to go to did not know how to treat Mitch. He almost died there right in front of my eyes. If it were not for this amazing nurse, we would have lost him. Mitch had almost total atelectasis of all 5 lobes and was not getting adequate oxygen despite what the O2 saturations showed. Mitch had to be intubated and had a tracheotomy the next day. He also had the G-Tube placed finally. We fought to be transferred to our regular hospital where Mitch's doctors are. We finally transferred after fighting for 2 weeks. He spent a total of 7 weeks in the hospital and caught 2 very bad nosocomial infections. Mitch had enterrocaucus in his bloodstream given to him thru his picc line by dirty nursing technique. He also received the terrible bacteria called pseudomonus, which is now colonized in his lungs. We had to fight long and hard to get him home. We couldn't find a respiratory company to give us the vents, and after we did find the company, we had to fight real hard to get the vents we needed. The day we came home from the hospital is one of the happiest days of my life. I never thought we would make it. Things were going very well at home despite not having any help form nursing. I have been at it 24/7 since Oct 2nd. We finally received approval for nursing help and decided to start with 8-16 hrs a week to see how we liked it. Well, Mitch got really sick the day before we were to interview a nurse and ended up in the ER. When Mitch returned home from the hospital in Oct, he continued to have low to mid grade fevers every single day. We went back and forth to the doctors, but could never find a reason for the fevers. I suggested a sputum sample and was told from my Pulonoogist they don;t rely on those anymore. I had a deep suspician that ugly bug pseudomonas was still around, and guess what? He did indeed have pseudomonas! We just got home on the 30th of Dec after 9 days in the hospital. Mitch had pneumonia from the pseudomonus bacteria. I am administering IV antibiotics here at home now and Mitch is doing much better. It was a very tough, rough road to go down, but we made it. We had many, many people praying for us and I believe God is holding Mitch close in His arms. God is not ready for Mitch yet as Mitch is not finished with his work here on earth! We will continue to have battles to keep Mitch healthy and having trach changes is a nightmare, but we will persevere, as we always do. The support of my friends at PPMD is very important to me. Thanks to all for being a sounding board! Heidi

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At 2:29pm on February 19, 2009, Diane Spiess said…
Hi Heidi,
Thanks for adding me i love to chat with other moms in the same boat as i have found i have learned so much from other mom 's infact if it weren't for another dmd my son would of been trached he has been sucessful on a niv vent via a mouth piece instead of tradition trach and i love to pass the word about his sucess as his old doctor told us we were just buying him a day mabey a week and he's has great sucess for 2 1/2 yrs ! well i will go for now feel free to eamil anytime ttyl .

Diane
At 6:43pm on February 16, 2009, Gregory said…
Please join our San Francisco Bay Area Families group.

Greg
At 2:45am on January 22, 2009, Ana Vaish said…
Hi Heidi,
Hi Heidi,

Hopefully all is well with you and Mitch. My son has deltion of 48-50, would love to chat....

Ana
At 1:30pm on January 7, 2009, Debbie Fish said…
Dear Heidi,

I am so sorry you all have had to endure these past months and I was shocked to find out Mitch had gotten sick again! The last I spoke with Carola things were going well. I'm sure you must be exhausted by now and hopefully no more bad bugs will grab hold and cause any more problems. You take care and if you need anything at all give me a call.

Debbie
At 8:22pm on October 19, 2008, Diane Spiess said…
hi Heidi,
my name is Diane Spiess and i have a 22 yr old son with dmd he uses niv 24/7 a vent via a sip mouth piece during the day and uses vpap at night he also has a super pubic cathierter and a feeding tube but even with all his tubes and machines he has a part time job he is such an inperstaion to so many well i wont go on to much mabey we can chat sometime.

Diane
At 9:38am on September 18, 2008, Deb Robins said…
Hi Heidi

My son is nearly 21 and has deletion at least 48-52. We are conducting advocacy in Oz at the moment for fine mapping so this is as accurate as I have gotten about 10 years ago. He walked till 9. He is taking ace inhibitor and beta blocker but opts not to take prednisone though he's tried both prednisone and deflazacort at the fringe of being non-ambulatory (as was all they knew then) the former to good effect but only for a year or so. He might be be going on nocturnal ventilation soon, but so far 6mthly sleep studies have been borderline. Is your son on bi-pap? What age did he start? I am trying to get Doug to stretch hands more as there has been a big downturn in function past 6 months. Do you guys do anything else? The bed control is starting to be a problem. Appreciate any new tips, which might be more recent for you if indeed our sons phenotypes are similar? BTW, I attended the PPMD conference in LA in 1999 but not since.
At 2:34pm on September 6, 2008, Tanya Fleming said…
The hospital should be able to direct you to a home health company that can supply you with a vent. The only thing I have is a bipap machine, that we don't use anymore. Let me know if you need anymore information.
At 7:15pm on July 29, 2008, Heidi Miller said…
HI Maxine! Mitch has a service dog from Canine Companions for Independence. This non-profit organization breeds their own dogs that have the personality and traits that work best to provide assistance to people in a variety of settings. Lynelle (Mitch's dog) had 2.5 years of training before Mitch was "matched" to her. We went trhough 2 grueling weeks of training with Lynelle at their facility. Lynelle is foremost a companion. Mitch has no use of his arms or hands at this point in his life, He can use a mouse on the computer and drive his w/c using the joystick, but that's all. Lynelle can open doors for Mitch. The doors must have European style handles. A "tug" is placed on the door for her to tug it open. Lynelle can retrieve dropped objects and return them to Mitch in his lap. Some dogs are trained to turn on/off lights. Lynelle can also open and close drawers. When out in public, Lynelle can "push" on the device that opens automatic doors; this is one of her favorite "commands"! If a credit card is given to Lynelle in her mouth, she will presetn it to a cashier by dong an "up" command. The cashier can then place the credit card into Lynelle's vest pocket for safe keeping.
As for steroids, Mitch is not on anything like that. I did try deflazacort when he was about 8 years old, but was scared of the side effects and took him off of the drug after one month. Prednisone was a very new tiral drug back then. We've tried creatinine when that was the "buzz". No benefits from that! Mitch was involved in the earliest trials for myoblast transplant back in 1991 at the Childrens Hospital in San Francisco. Nothing much came of myoblast transfer and now gene therapy is the newest rave among researchers. I have heard about the benefits of idebenone, which is similar to the effect of Co-Q10. I am going to start him on idebenone when he has his G-tube placed as the pills are too big to swallow safely. Mitch is at high risk for aspriation and also "chokes" on many types of food. He is going to have a G-tube (feeding tube) placed Aug 8th. Mitch also has loss of appetite and some weight loss. Thankfully, he had a few pounds to lose to begin with! He is at a good weight right now and the docs don;t want him to continue to lose at the current rate. I look at placement of the feeding tube as a positive thing. I am worried about the anesthesia involved.
How was the conference? I am very interested to hear if anything was said about G-tube placement and the use of idebenone. Also, was there any mention of the use of non-invasive ventilation? Mitch just started using NIV during the daytime and feels it helps a lot. BiPAP is great for nighttime.
Nice "chatting" with you! Hope to hear all about your new dog! Take Care, Heidi
At 4:27am on July 28, 2008, maxine Strydom said…
Hi There, thanks so much for your fantastic email, i am so happy to have you as i do stress that i am on top of things, from the ppmd conference, i always walk away with fantastic things to bring back and add to jarryds care, so last year when i got back i started the applications for a service dog and funny enough, last monday our new family member arrived for jarryd, his name is prego and he is just beautifull. so we now have a service dog for him that is not really listenening at the moment but the trainers are here now doing all they can, does your son have one, and please let me know what he can do for your son, i would be interested in knowing what they are capable of. He is on bipap at night, and this has made a huge difference, no steroids, and no supplements, so i would also love to hear what you are doing there, thanks so much for your kind words, you are amazing, love from your south african friend, Maxine
At 11:05am on July 26, 2008, Julie Garcia said…
Hi Heiti,

Just wanted to check in and see how things are going. The air quality has improved here and that is good.

Do you have a medical baseline for your utility bill? Don't know if I have already mentioned that or not. I would rather repeat something then not....

Hope to meet you some time soon.

Take care,

Julie
 
 
 

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