OuR Update….

[Jennifer and Jack]

Hi,

I figured I would give those who would like an update my update… No offense will be taken if you don't want to read it, but I actually was surprised and amazing blessed with how many people have asked. Thank you so much.   

I have no idea where I left off as things have been pretty non-stop since, well I can't remember…… Several months ago, I was to the point in my health where I was wheel chair bound, unable to come off Bi Pap at all or Heliox which is a combination of Helium that is mixed with oxygen, reserved for the most critical patients as it is beyond expensive….. and I was on it in the ICU for weeks at a time….. My primary doctor put me in a bridge program to Hospice. She wanted me to go in Hospice but I refused because I was told I could not seek out treatments in Hospice.  That isn't an option for me, while I fully believe in Heaven and how amazing it is going to be there.. breathing, pain free and infection free….. I love life here so much.  I don't want my parents to have to bury me and I didn't really want to quit though I was starting to think I did…. 

My doctor had me make up a will and I had to do all that fun stuff…. Yay…. however, I just didn't want to be done living…. 2 reasons, A parent should never bury a child and who would love my Jack in the manner in which I have spoiled him beyond believable.   I had no fear of being dead… just didn't want to be. :)   

Several months ago I went back to CO for one last chance for them to help me.  They turned me down for the surgery I need… They told me that I would not make it off the table…… The condition, in addition to Cystic Fibrosis is One hundred percent tracheal bronchial malacia with 100 percent collapse of exhalation. That means that every time I exhale my trachea and all tubes leading to my lungs collapsed, touching each other causing me to choke so hard I would pass out…  The type of malacia I have is so incredible rare there is less then a handful of people in the world with it, Its proper name is Back wall Bronchial Hypertrophy.. Basically unless I had machine shoving massive oxygen at high pressures into my airway I couldn't breathe… It damaged my heart and caused a lot of other issues…  

I came home with a list of requirements that National Jewish wanted me to meet before they would consider surgery, only to find out that the type of Malacia I have would not benefit from the surgeries they could do. Even if I was willing to take on the new trachea's they are growing from 3 d printers and stem cells it wouldn't work for me because I am blown out all the way to the attachment of my lungs.. My lungs have shriveled up from not being able to get air.

By the Grace of God I found a surgeon in Ga… I loved him because he was the Anti-trachostomy guy. I know I am a Nurse but we all have our limits.. Mine was I can handle anything but a trach… This surgeon hates trachs and does massive reconstruction on airways. he surely was going to help me. He took me in just to look at my airways and I went into complete respiratory failure. a full code ended up being called though I was still conscious for most of it. I was wide awake, unable to breathe, they were unable to get a tube in me and I was laying on the table listening to everyone around me freak out…… They were able to obtain an airway and I was admitted to the ICU….

It was then that it was determined that I would probably die very soon if we didn't start to do something.. so my surgeon did the one thing I really, really didn't want and I received a tracheotomy……I didn't have a choice if I wanted to live they had to do this.. if not…  I was at the end of my line..

A trachostomy and a patient with Cystic Fibrosis is a horrible combo at best as now I have a direct line into my lungs…. while I have a semi stable airway in some places.. I have been riddled with massive infections that are not responding well to antibiotics….. or haven't so far.. they just mutate to the next bacteria resistant to the last one I was on. So my lungs are taking a major beating.. That is okay I know how to fight back...

A few weeks ago while getting a PICC line in, I had a stroke, which would be impossible because they were in the venous part of my body, the only way possible for that to happen is if you have a hole in your heart.. I did have a hole in my heart but it was closed but I got septic from it and apparently the hole is open. what a fun way to find out. 

Having a stroke at my age … searching for words ..knowing in my head what I wanted to say but not able to say the right word when I tried to get it out ..was so darn weird… Thankfully I resolved really fast from that and I have very little residual.

I basically have been on IV' antibiotics since October.. I stopped today……   I have had a few surgeons reach out to me who have heard of my case.. hey that's what happens when you are a celebrity.. or umm a total medical mishap…and while at this time there is no surgery or any procedure that will cure my airway… I have some hope down the road.

This Thursday if I can get clearance from my Neurologist, I will have a second part of my surgery to hold my airway open even more… We are guessing at this as it is kind of risky… this trach has stents attached to it and it does not have an inner cannual .. so with my CF this could lead to total obstruction of my airway and not be good…. but if it works it will give me more stability to my airway…. I am an experiment to them…..and they are doing the best they can.

The amount of medical equipment, supplies and treatments I need, not to mention the places I need to travel for care is astounding…. and I have been blessed that every month some how by the Grace of God I have been able to get most of what I needed…. 

My sweet Jack……. I don't know how to describe to you how much I love him….. having him is the best thing for me in the entire world….  I have medical people in my house pretty much all day … Jack is so cautious of them.. He is so afraid they are going to take me away….. Watching him cry to get to me when they deem me in need of going to the ER and call 911 breaks my heart… It rips it out of my chest… and Jack is never boarded, never left alone and always has someone he knows and loves with him but he wants me.. and the look on his face is enough to crush me and anyone who says dogs don't know are just flat out wrong.. Jack knows.. way more then he gets credit for…..  

I am working on his Birthday blog forever but I alway start to cry and erase it.. His birthday isn't until March but the love I have for him grows each day...

So for now.. Jack and I are fighting together….. Playing together.. Living together…. 

Thank you for all your love and concern .. For your prayers, private messages and support…. You just have no idea how your life is going to turn out and really even though I was an Emergency room nurse and I saw peoples lives change on a dime, you just don't' think it is going to happen to you…. 

So prayers that I can get surgery clearance and that I can have my procedure in Georgia next week..

Oh Yeah, I kicked my entire bridge to hospice team out of my life, at least professionally and I hope never to see them again… They all still stop by but it is just to visit and say hello…. because they don't want to lose their friendships we formed but.. 

for now I leave you with this picture of me… Fighting to breathe, fighting infection and LOVING my life… Just yesterday with an IV in my arm, a trach in my neck and a nasty cough I went sleigh riding with my little honorary nephews….. So much fun .. so grateful…. I don't know what the future holds but it is looking better..

For now I fight.. I live. I love. I believe. I have faith. I enjoy every blessing I have. 

Thanks for caring

[Ellen, Brûlée, and Tira]

Your spirit touches my heart. You clearly are aware that God keeps us where we are needed. He is using you in ways that your heart understands.

We'll keep the prayers coming; you keep the faith!

[Jennifer and Jack]

Thank you..... I had surgery Thursday.....I had a Dozey of a time with the anestheia but am out of it now.....the new procedure so far has not proved to be successful and currently I am back on Bi pap..hoping the swelling will go down and this will work....if not, I will be headed back to OR early next week to have things go back to phase one....this second step was trial and error....it seems more of an error then a good thing right now and it has been a whole since i have struggled this hard to breathe......the good thing is they can go back to the other....not what I wanted. But we will see

Ellen.....It is amazing to me that you were able to capture my heart so well.....actually freakishly amazing because what you said I penned is my hearts desire for people to know.....thank you for taking the time to write that meant a lot to me.

[Ellen, Brûlée, and Tira]

Jennifer, your blog is bittersweet; frightening and filled with immense hope. I read between the lines that the nurse in you is putting out there a beacon-light for others, who may have flagging spirits. You've penned a "How to not quit living when life seems too hard to want to fight for more of it." It's your way of saying , "I'm still here, and I WILL continue to help others see how precious life is!"

You are a beautiful, courageous, and inspirational woman. You really set the bar high! Go, Jennifer!

[Colleen, Jake & Baxter]

I mean Jack...LOL.

[Nancy, Ned, Clancy, and Charlie]

Sending prayers for successful treatments.

[Colleen, Jake & Baxter]

All I know is that He is still in charge and we're not.  Thank you for telling your story and my prayers are with you.  May His peace be upon you and Jake.

[Bonnie and Kona]

Yay for livin' life! Love you!!!

[Jennifer and Jack]

Thank you!!! I am so hopeful.....it's almost scary how hopeful I am... But I have to believe ..less days in the hospital and more days living an amazing quality of life have to be coming ...

Getting to do this round of treatment at home has been so therapeutic ....Jack is so happy and so am I...hope this will be a short stay this time and no rebound admissions!!!!

We got a life to live!

[Diane and Alma]

Hi Jennifer, I have been following your posts but have not responded...  probably because I can't find the words to convey...  just how much I sincerely hope that all goes well for you.  I'm sending positive thoughts and prayers to you and Jack.

[Pat and Traveler]

So glad to hear from you, Jennifer.  You are a fighter and my heart is always with you in your battles.  Glad you'll be able to get that surgery!  I know you'll let us know how it goes.  Stay strong!