Happy Holidays from Jack and his Mommy

[Jennifer and Jack]

Hi,

I know I seldom post on here but I read on here often.   This past year, 2014 was both the most trying, difficult, defeating and almost life ending and at the same time the best, best year of my entire life.

I have spent the past year with a trach in my neck  hooked up to a vent breathing machine because I had a very rare airway disease called Tracheabronchial Malacia, I had 100 percent collapse of my airway, I was able to get air into my lungs but not exhale.   

Through many, many months of research I was actually flown to Ann Arbor Michigan in July, I was going to be the first human adult to receive a 3-d printed airway splint, They took images of my airway and recreated it with a 3-D printer, it was astonishing, In the beginning of July, no matter what they did, they couldn't oxygenate me so the decision was made to put me on a surviver flight to U of M for what would be the first ever adult to get this, the procedure was done on babies but made out of different material, My entire family gathered in MI along with my closest friends, I was interviewed by the News Paper, New Stations and all systems were go, 16 hours before my surgery, the FDA called my surgery off saying that one of the materials was not safe for human use and more animal testing needed to be done.

The hospital essentially dumped me because researchers could no longer use me or help me.  We traveled home by car in July with no hope, me not being able to breathe, we all thought this was my last shot as I was repeatedly told their wasn't anything else that could be done, I was told I could no longer live at home because I needed to high of a vent setting and I lived alone so they  wanted to place me at the age of 41 in a nursing home.  

I was never so desperate  in my life, I wanted to live so badly but didn't want to live like this….. I became obsessed with finding someone to take a chance with me, Finally I read about a surgeon in Boston who has done a surgery called a tracheobronchial plasty, I sent him my records and begged for him to just see me… One of my best friends and I went,  and a long story short I got along amazing with the team, and I ended up staying in Boston for three months. I successfully had a 16 hour open chest surgery on October 8, they restructured my entire airway, removed a portion of my right lung, ( I have cystic fibrosis too)  I woke up and the next day was walking around.  

I am now a little less then two months out from my surgery and I have had my trach removed, can breathe on my own except for bi pap at night and have more energy then a teenage girl.    My airways are healing, I was not supposed to even feel a difference for three months but already I do….   a  big one...

I go back in Feb and I can't wait.  I will be going back to work, as a nurse one day a week some time next year and I got my life back, I went from almost being put in a nursing home to taking Jack to see Santa the other day. 

2014 was one of the hardest years ever but by the Grace of God and the love of everyone I have in my life, I am doing amazing……   

I am so looking forward to a New Year and all the amazing things in store.  Whatever Holiday you Celebrate, I pray it is a good one, I pray you are filled with hope, love and peace.

[Jennifer and Jack]

Aww thanks Joanne! I just posted a link to it in a blog ..because today's Jacks birthday and i always try to write an update then.

It has been an incredible journey...that's for sure....... I am so grateful to be alive.. To have beaten the odds for now and to have my life back! My story has been aired in a lot of the major cities, mostly in the New England area....,I also have a TV show coming up as well as ABC Columbia is doing a follow up on me and so will Boston when I go back....., I am so grateful for all the awareness to this monster, grossly unknown disease that was hidden. In my cystic fibrosis. You can always follow me on FB If you want... The support has been extremely overwhelming but even more so, other people's lives are being saved, my story had over 6000 shares to it and I have spent the ,ask week and a half giving out my drs numbers... Or sending people to the right place for help for their disease. To date my surgeons have received and are I nthe process of triaging dozens of people, Including a mothers 18 year old who heard my story and reached out to me, that child's life is norm je g saved! I am so grateful ....all my suffering had not been just for me to get better ....now my mission is raising awareness... I am in the process of starting a foundation.... Thanksmformyour kind words... I walk the Lake Murray Dam in Lexington often... If you ever want to meet up let me know !

[Joanne and Preston]

Hi Jennifer,

I've been following your health on here since I joined 1 1/2 yr. ago and have been wondering how you were doing . I live in Lexington, SC and then the other day on TV news I saw you and heard you story.  I'm so happy to see how well you are doing.  Pray your health continue to get back to normal.  You and Jack look so happy with Santa. 

[Colleen, Jake & Baxter]

Jennifer write a book!  You have a story that will give life and hope to others in desperate situations....just my opinion:^))

[Robin and Libby Louise]

Hey, I think that this Santa guy is your special man!  LOL!  You look pretty cozy!  Fess up!  Seriously - it's great to see you with Jack looking so happy and well - that's the most important thing.  Enjoy every second!

[Jennifer and Jack]

No, no pictures yet, Don't want to jinx myself, not that I believe in jinxes, I haven't even posted on my FB wall and anyone who follows me knows that is a huge shocker.. Nothing serious, I am pretty picky in what I want in a guy……. but it is fun all the same… 

[BG and Gavin]

So glad you are happy and healthy!  Great pic of you and the Big Guy and the Little Guy.  Special man?  WHAAAT?? Post a picture of him (we promise he won't see tee hee).

[Jennifer and Jack]

Thank you, every day feels like amazing… Just the fact that I can get air into my lungs and I am not hooked up to a ventilator feels like reason to skip though my house singing…. who am I kidding , I am singing, dancing, skipping and thanking God.  I am jammed up with fun things through the holidays but plan to be a more regular poster again when I get back from my follow up in Boston…….

[Stella]

Nice to see you back posting on DK!!

[Cindy and Olive (Ollie)]

We are all touched by your story. Thanks for sharing, for inspiring positivity and we wish you all the best!! Hugs,

[Diane and Alma]

I love your picture and your endless, positive attitude.  Happiest of holidays to you and Jack!