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Debbie Fish and Susan Rathfelder are now friends

Feb 22, 2011

Debbie Fish posted a blog post

Christmas in the hospital

On Thursday, December 17th, our 23-year-old son Nick will be entering the hospital to have a tracheotomy. We had hoped we would never have to do this but Nick is one of the minorities that cannot use NIV. We are very concerned and wish that he wasn’t going to have to spend Christmas in the hospital but we also realize that this is in his best interest and will improve his quality of life.When faced with something like this it is easy to get overwhelmed and let living with this disease totally…See More

Dec 11, 2009

5 Comments 0 Favorites

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About me:: I work full time in a management position. My family is my main passion but I also enjoy reading, working in my gardens, going to the gym and cardio salsa classes.

About my family:: I have 3 sons (28, 23 and 22), 2 grandsons, 1 dog, 1 puppy and 1 cat. My husband is a stay at home dad and when he is not taking care of Nick (or youngest with DMD) he is working on some electronics or ham radio project.

Name(s) of child(ren)/individual(s) with Duchenne:: Nick

Age(s) of child(ren)/individual(s) with Duchenne:: 19 or older

City:: Stockton

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Christmas in the hospital

Posted on December 11, 2009 at 12:12pm 5 Comments 0 Favorites

On Thursday, December 17th, our 23-year-old son Nick will be entering the hospital to have a tracheotomy. We had hoped we would never have to do this but Nick is one of the minorities that cannot use NIV. We are very concerned and wish that he wasn’t going to have to spend Christmas in the hospital but we also realize that this is in his best interest and will improve his quality of life.

When faced with something like this it is easy to get overwhelmed and let living with this… Continue

Cough Assist

Posted on July 15, 2008 at 3:40pm 3 Comments 0 Favorites

Hello everyone and we hope everyone had a safe and enjoyable 4th of July weekend. We stayed home and it was nice for me to have 3 days off from work. Nick’s coughing and vomiting episodes have continued even though the air quality has been a bit better here in the valley. He has so many secretions and is requiring suction almost on a daily basis. His spirit is good and we finally have him convinced that if he lets us know right away that he is coughing we can get it taken care of sooner without… Continue

Story Time

Posted on June 25, 2008 at 11:33am 0 Comments 0 Favorites

School has been out for a few weeks now and Nick is enjoying spending time at home with dad. We haven’t been out much but there has been enough entertainment at home. The weather has been really hot and now this past week we have had a lot of smoke from all the wild fires. The air quality is bad and we are keeping Nick safely indoors. He has had two coughing incidents during the past week that have required a lot of suctioning but thankfully no desaturation. Not sure if the bad air has caused… Continue

Bitter Apple

Posted on June 16, 2008 at 12:35pm 2 Comments 0 Favorites

Bitter Apple

I have set up a Caringbridge site and use it regularly to update family on what is happening in our house. Now with this new site up and running I will make sure to post all my journal entries here also.

Anyone who has raised a puppy probably knows about a product called bitter apple. It is a spray you can put on whatever you don’t want your pup to chew on. When we got Steffi we were using a spray bottle of water to discourage her from chewing on Angel… Continue

Comment Wall (13 comments)

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At 12:44pm on February 22, 2011, Susan Rathfelder said…: Debbie, Julie Garcia suggested I talk to you about my son Jonathan's Bipap issues. I am not even sure what questions to ask at this point.

At 6:44pm on February 16, 2009, Gregory said…: Please join our San Francisco Bay Area Families group.

Greg

At 11:06am on July 26, 2008, Julie Garcia said…: Hi Debbie!

I need to give you a call. It is a little early.

Let me know when you will be in the area again. I would love to get together.

Take care and hugs!

Julie

At 12:45pm on July 25, 2008, Heidi Miller said…: 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

At 2:37am on July 22, 2008, Kim Maddux said…: 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

At 5:09pm on July 17, 2008, Gregory said…: 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.

At 2:42pm on June 30, 2008, Mitch said…: 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.

At 12:45pm on June 30, 2008, Julie Garcia said…: Debbie,

Thanks for joining the California families. We need you!

Take care,

Julie

At 11:49pm on June 25, 2008, Heidi Miller said…: 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

At 8:22pm on June 25, 2008, Mitch said…: Thanks, It was nice seeing you guys too. How is Nick doing? Is he online? I would like to email or chat with him sometime.
Take care