Wednesday, December 31, 2008

Rejection rears it's head

I first posted this on Shawn's caringbridge site, so it's written for a general audience, layman.
I know many of you who understand CF and transplant will think it is simplistic, or maybe I am being unrealistic but hey it's the best I could manage. I didn't want to re-hash so I cheated and copied it from there.

Original Post:

Well tonight we got some disappointing news. Shawn had a biopsy yesterday, a tissue sample from Shawn's lungs was taken to evaluate the health of his new lungs.
The doctor called tonight, there was a low level of rejection detected.

Rejection is the word that evokes a plethora of emotions, fear being my personal one, my heavy hitter.

Shawn will be admitted on Friday and put on very high doses of steroids to knock down his immune system. His is working too well, it recognizes Shawns new lungs as a foreign object, despite his anti-rejection meds.
This will hopefully only be a three day stay, he will be discharged on a high dose prednisone taper.

The Doctor assured the two of us that this was very low-level rejection, very manageable and very common. Par for the course, so to speak.

We got the news while driving to a friends house, a friend who coincidentally is also a mother to a son, Dominic. Dominic has had three liver transplants. Needless to say she is an expert. L listened to me blubber and bawl, as I got my news across to her.
L was very reassuring, she talked me down. Early detection of very low level rejection is not total freakout stuff. It happens, it not unusual and due to the relaxed pace of admission, definitely acceptable, concern worthy, but o.k.
Roll with it.
It is so easy for me to have Faith in God when things are moving happily in a positive direction. When things are scary, I have to fall back and surrender my fear and worry to My Heavenly Father.
The Faith of a mustard seed. I have that, I have much more than that.
Tonight I am at peace.
Happy New Year to all of you !Happy New Year and God Bless You !
I am wishing you all peace for this wonderful season of new beginnings.
We have been so Blessed in 2008, I can't wait to see what excitement lies in store for us in
2009 !!!!

Monday, December 29, 2008

Walking with Shawn

It seems strange but it's real, we have been going out for real walks everyday. He's obviously still improving but it makes me feel like I'm in great shape, most of my walking partners kill me. I am 5 ft I have pretty short legs, but as a nurse I really learned to hustle.

It's great anyway, exploring the area, up and down the twisting hills through our new neighborhood is a lot of fun, keeps me entertained. There are some beautiful homes, great history.

Anyhoo...I'm still working with my sea glass, I have completed several pieces and I'm pretty proud of them. I'd wear them. I love the glass. The depth and history it has, where has it been?

I'm going to come up with a list...not sure what kind of list but goals of some sort. I need some purpose in my life. I need some structure.
I guess my options are unlimited so who knows what I'll come up with but I know there have been a billion times that I have said, "I have always wanted to do that...or go there or whatever."

My life keeps interfering with my living.

Not this time

Living 2009

Wednesday, December 24, 2008

Merry Christmas Eve !!!!!

I have to stop farting around and finish up about two hundred projects that are Christmas gifts. Since our finances are, shall we say sparce, we have what we need.
I decided to make gifts,
I decided to teach myself how to make jewelery with the sea glass that I've collected since we moved here. I love it. Sea glass is so magical.

So far I've made around a dozen little angels. I'm not sure what I want to call them....I feel like they represent my husbands transplant, the sea glass crafted into something giving it a new happy life. Our donor, his lungs giving my husband a beautiful new life. I don't know.


But now I'm moving on to the serious and excitingly creative jewelery. My head is exploding with ideas. I've been drawing out designs for months. Tonight Adderral and caffeine will keep me focused and in the zone. Tina's workshop

Well that's the plan...

Shawn is sort of trying to stay out of my whirlwind. I love him.

Sara has been the big wrapper, she's a great wrapper.
I love her.

Merry Christmas guys!!! Enjoy each other,

Monday, December 22, 2008

This one is no for the faint of heart

My Hero My Babe HOME!!!!!!!! Doesn't he look incredible?

This is Shawn showing off his incision

Obviously I don't know how to do this

This is Post-op Day # 3 Sara was very excited to see her dad. All gowned and gloved and her sweetness shines right through
Post-op Day # Two

Here he was pretty fresh off of the vent, looking a little stoned.
He is smiling under there I swear!

The Big Day Thanksgiving Morning

This is Shawn the morning of looking very "lost in thought" about twenty minutes after the call.

Shawn Sara and I all packed and ready to go. I had to take these shots and I am glad I did.

Friday, December 19, 2008

It's been soooo long

Well what can I life is very different today than it was just three weeks ago. Wow. Shawn is doing great, he looks fantastic, clinically he is surpassing all of the Team's expectations, attitude wise he is positive and upbeat, realistic and hopeful.

The first couple of days he was home were really awkward. I had become accustomed to Shawn getting up in the morning and moving from the bedroom to the couch. There I would bring him his treatments, breakfast, treatments, snack,treatments, lunch, treatments, snack, treatments, dinner, treatments snack, bedtime.
Not that he did nothing at all but I guess he did much less than I recognized.

I say that because now he is up and around all day, in my space, in my kitchen, taking care of himself and even taking care of Sara and I. Preparing meals, throwing on laundry, making the bed. Ohhhhh the humanity.

So many things changed in our relationship when he got sick, but they changed a little at a time so I guess I didn't notice. Plus they were being replaced with other tasks r/t his being sick. Little by little his lungs stole our "life" away from us.
Being in bed with him and chit chatting in the middle of the night

Yikes I had to stop typing on 12/19 and today is 12/22nd so I have to catch up. I'll start a new post

Wednesday, December 3, 2008

My Babe Can Breathe

It's amazing yesterday I could not come in to see Shawn, things had to be taken care of during the day and then my truck crapped out. Perfect timing because it got me to take it off of the road and get the Jeep reg/ins etc.

I missed Shawn, I talked to him several times but it wasn't the same. Especially when I knew he was really hurting. I couldn't comfort him. You know we both got through it and we're just fine.

I feel good, I feel tired but so relieved. I feel at peace, taken care of, and just trying to stay in the positive, in the light.
People often ask me what can we do and I never know what to say because I can't ever think of anything. Last night a good friend of mine and a fellow mother at my dgtrs school, called and delivered at least a weeks worth of dinners/lunches. I was so excited over it. Sara and I felt like we were feasting! It was wonderful, to not have to think about what to eat was great.
My girlfriend was almost as excited about it as I was. I'm so thankful.

These awful last four years are finally going to be behind us. The house, the bills but most of all his suffering, it is now in the past.
We're moving forward with our new life. Our healthy new positive peaceful life.

Monday, December 1, 2008

Monday and still amazing me

Shawn is doing so great. Today he has had his cardiac wires and two of his chest tubes removed. He is on a liquid diet, but is thankful for even that in his belly. He has been on 1L via NC and his sats are 99%, they are going to d/c that but gently for security issues. The trauma to the LLL is quickly resolving, his incision looks great. No complaints, no issues so far so good. I spoke at length with the surgeon he is clearly thrilled with Shawn's course thus far. They were going to transfer him out of ICU today but a bed wasn't going to be available until tomorrow, so the plan is tomorrow he'll be in the step down. Woo Hoo !

I still feel kind of dopey, sureal experience. I'm so thankful, so grateful. I love to just look at him, I can't believe it even though I know it. We're on the other side now. Our new life is starting and it is wonderful.

Sara Lou is doing great. Since nothing was rushed, frantic there was no anxiety. She came to see him once he was extubated. She is used to seeing him in the hospital so that's no big deal, but she was interested in seeing that incision. I like to see it too. Seeing it is very comforting, it makes me feel safe because I know it's real and I know he's living and breathing in peace, with us, together.