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

[Jennifer and Jack]

Laruie I think I shocked myself too… I had no intention of going sledding,  I was just happy to be going to watch and then something came over me and I said I am going.. sat on the sled and put the baby on my lap and away we went.. Not the smartest move as I could have done some damage but it was so much fun.. even though I only did it once.

Thanks Allyson I GOT MY SURGERY clearance so it is a go for this Thursday.. So hoping for a great outcome.

Thanks for the hugs Ricki…. 

That's right Bonnie, I am pressing on toward the goal which means I need to crack down and finish my continuing eduction credits so I can renew my license .. and prayerfully someday so some type of nursing again to make money.

Thanks for caring about my updates Miss Ellie.. THanks for your prayers.. for now today being an ordinary day.. I am going to enjoy it because ordinary days for me are rare and they have become my extraordinary . :)

[Miss Ellie]

I love to get your updates Jennifer... they show your true strength, courage, positive outlook and amazing attitude...you are truly an inspiration to us all...and that beautiful smile of yours makes my day...we continue to send our thoughts and prayers...will be especially thinking of you on Thursday:)

[Bonnie and Kona]

So happy to see you got clearance for your surgery on Thursday! Pressing on toward the goal...

xoxoxo

[Ricki and Tara (doodle)]

Praying that you get the very best outcome in this situation. Sorry you have been through and are still going through so much Jennifer. Hugs to you and Jack.

[Allyson, Peri & Taquito]

Thinking of you - I hope you get surgery clearance.

[Laurie, Fudge, and Vern]

Jennifer, I was amazed when I saw you sledding on FB and happy to see you having so much fun. I will continue to keep you in my prayers. Stay strong!! I am cheering you on from the sidelines.

[Jennifer and Jack]

You all are so generous and kind and loving.....thank you for your encouragement.

[Jennifer and Jack]

Thanks Camilla ......I adore following your photos and life.....

[Jennifer and Jack]

Thanks Donna ! I hope you are right !!!! Thank you got cheering me on!

[Donna K & Quincy]

Jennifer, You will always be known for your upbeat attitude, fighting spirit and kind heart, but the one thing you will be never know as is a quitter. :>)