Update on Me

[Jennifer and Jack]

I have been leaving bits and pieces of updates through blogs and posts on other people's stuff so since a few of you asked me I figured I would type a quick update.

First the good news.. Jack is doing amazing.. He is finally at a healthy weight after being underweight for so long. He is on just cortisol replacement for now and is doing well except for heat intolerance.  He seems to have adapted very well to my lifestyle of living with me or being with my mom and molly. There doesn't appear to be anything we can notice that affects him... He is just as happy with my mom as with me, eats the same etc..... He has it pretty good being spoiled rotten and knows how to work it to get exactly what he wants...

He is entirely loved and cared for.... 

My health has never been so bad honestly...... I guess that comes with age and being someone with CF and other really crap genetics but it still surprises me... I have been in and out of the Intensive Care Unit twice in the past few weeks and discharged right from there to home so that I don't run the risk of catching anything else.

 Basically I can't leave home now without a mask... and even then I am at risk, the slightest germ is really really making me very sick.

Jack got his kennel cough shot not that long ago.... we have no idea if I caught it or not, I culture bordetella in my sputum so we don't know if it is acute or not.. yes in other words kennel cough....I don't know if that made me sick, we don't know.. I have been sick since before Easter and I have yet to really bounce back.. I have been living on Heliox in the hospital which is a combo of helium and oxygen.. the helium and a much lighter gas then oxygen and it gets into my lungs better then oxygen so some how the oxygen attaches to the helium and I wear a full mask and I can breathe much better with it on..I sound like Mickey Mouse..literally because I am sucking helium but it works.. I did that for six or so days but each tanks if $5000.00 and I go through one tank every three hours so it is not sustainable..

I wish because it makes breathing so easy...seriously to not have to use every chest muscle to get a breathe in...well I can't explain how that feels.

I lost the job position I was offered full time from home.. My boss is a very good friend of mine and was losing sleep over me taking the position because she was afraid I was going to lose my ability to work and not have disability and have to go through the two years it took to get it... It took everything I had not to beg her not to do it but she was right.... I will be able to work part time from home and keep my disability which I really need.. 

THe doctors from National Jewish really want me to get a trach at this point... I never wanted one.. I was so opposed until recently.... My quality of life is so horrible right now, ( I don't say that for pity but to show that I am ready to do anything to be able to be out)  that I was finally willing to get one... just so I can go out with friends.. I am such a social butterfly. I love people so much and I can't do anything anymore without ending up in the hospital so in my opinion, that isn't living so I was willing to do it.

My local team decided my airway was not trach material and decided against it... They didn't feel it would help.. I have to say National Jewish really is who I am going to have to trust and I am praying a way is made for me to go back there because I need there help very badly...... Financially it would be way to draining on my family to even ask to go right now.. We have done some phone calls with them and they ordered more tests......

The thing that got me this time is, in my whole life, I have never lost hope. I have always been positive, always put on my boxing gloves and fought like heck...... somehow I lost my fight.... my doctor saw that and saw who I used to be and what I became and was really saddened but then she went off call and on to the next dr.

Right now I am trying to rally to get my spirits up.... I have a broken rib from coughing so hard.  I am trying so hard to remember all the amazing things and people I have in my life.... and that I am knocked down but not broken and that I will get up again, shake myself off and continue on this fight. If not for me but for Jack who I pretend can't live without me, for my parents who love me and for everyone else that has spent so much time loving me.

My family is trying very hard to do what they can, planting flowers, sprucing things up, friends are loving me, I guess if they don't quit I shouldn't either..

I really wish I could get to Colorado more easily because they really are the best.. for now when I gather a little more strength... I will make more contacts, do more research, advocate for myself more.. but I need to rest and get strong first.

Thanks for asking.... Now off to eat a yummy dinner and snuggle Jack

[Janie, Jackson and Jilly]

My thoughts are with you and hoping you get stronger each day. Good news on Jack, glad to hear he is doing so well.

[Becka]

I'm glad to hear that Jack is doing well--I just wish your news was better. I hope things turn around for you soon. You are missed around here!