All is well

Shawn is doing great!
He's home pigging out, making up for lost time.
He feels much better. He told me he went up and down our forty one steps four times and felt fine. No shortness of breath.
It's so amazing to me. It was only four months ago that he couldn't walk up with up FOUR steps on 5 liters of oxygen without gasping for air.
What a miracle.

His surgeon called me as soon as Shawn went into recovery to give me the details. There are still areas that continue to heal and slough off dead tissue which will need to be cleaned up, so he'll go back in another 2 weeks. Otherwise his lungs look great.

So all is well in my world, the sky did not fall.

Tomorrow morning I head back to Boston. Back to my home, my husband, my dgtr and my life. I can't wait. I can't wait because it's all wonderful, I am Blessed and I am grateful.

A Good Day

I had a beautiful breakfast with Shawn at this little diner I think it's in Salem. Then Shawn dropped me off at the library to attend the Swampscott Historical Society meeting. Which I did and I enjoyed that. Then I walked home on this gorgeous sunny day, dropped my purse off at my house, and headed down to the beach.

Today I am so grateful to have this apartment, to live in this lovely community, to have nothing and everything all at once.
Maybe that doesn't make a lot of sense but a few years ago our lives were so different. Today we rent not own, we drive an 89 Jeep that my brother-in-law gave us instead of the two SUV's we used to have. Today we don't have all of that responsibility hanging over our heads anymore, the constant worry about the house and knowing the house was a huge source of misery for all of us but unable to sell it to break even in it's run-down state. It was just really a ton of money going right out the window, a fucking shame. We had two hefty truck payments and ins payments and so on. I know most people understand how expensive it is to live and when your income is cut by two thirds you can't live the same way.

So this really isn't a bitch session or poor me, it's a declaration of my freedom. my freedom to be happy again.

Our lives have improved in so many ways, I am so grateful.

Having Shawn back is incredible. Sometimes I really have to stop and think is this real? Were we all so stressed out and squashed just a few months ago? Was he really on the brink of death just 14 weeks ago? Were we up to our eyeballs in debt?
It really seems like it was just a long bad dream or sometimes it seems like it's all maybe just a book that I read and not our history, our reality.

Every morning I wake to the sun rising over the ocean and bouncing off of the water and into my room. It is glorious.

My husband is breathing deep and peaceful.

We go out and enjoy seeing our friends, a lot of whom we haven't spent time with in years because Shawn was so sick and I was so fucked up. We all sit at the dinner table together each night. We all talk and laugh and goof around because Shawn's not suffering anymore. He's fat and has color in his face and life in his eyes. He can breathe. He's better. It's the most wonderful thing in the world. I can't believe how Blessed we've really been.

Today we pay our bills ahead of schedule every month because we are living within our "new" means. We live in a state that although not perfect has healthcare coverage that is made affordable to just about everyone and we'd be lost without it. Shawn's Transplant Team is amazing.

Well i realize that this whole post has been a bunch of disjointed rambling but today that's where my mind is. All over the place but very happy
I am so happy.

Shawn's Shaggy Airway

Shawn went in for surgery today, the plan was to keep him overnight but he did awesome so Yay he got to come home.

I am so happy with his team, they are incredible.

Ten years ago when I started trying to get a diagnosis for Shawn I developed a deep sense of animosity and distrust toward the entire medical world. This was before I was a nurse, I became a nurse because no-one would listen to me. Amazing that two initials after my name and "Poof" what I say matters.
Anyway the point I was getting at is I was trying so hard to find what I felt was the best care for Shawn, I wanted someone to take care of him the way I did. I wanted a medical team that listened, considered Shawn as a person in their decisions, I wanted a staff that washed their hands, that checked meds before walking into his room, doctors that were passionate about the care they provided, the lives they were messing with.
I wanted the best for him.

Well I haven't been everywhere in the world or the country for that matter but I'm so thankful that Shawn has the team at Brigham and Womens Hospital. We were at MGH, not the place for us. Ackkk

So anyway happy the pieces have fallen into place and I am completely at ease with B&W.
I never stressed even when he was going in for his transplant. I feel like he is getting the best care that they can give.

He's out of surgery

Shawn is out of surgery he did great ! The surgeon went in and cleaned up the seams, got rid of some necrotic tissue that was just sort of hanging out in there clogging up the works. According to the surgeon, everything looks good, no purulent secretions, the airways look fine. He said that there are "scabby" type areas from the original trauma, that just take time to slough off, sometimes months and months and months. They took biopsies and sent them off so I'll be waiting for those to come back.

He did have a slightly elevated white count, so the surgeon said the transplant doc might want to put in a PICC line and put him on a couple of weeks of IV abx but we'll see what she says. I'm wondering about the steroids, will he have to go on a higher dose for now? Hmmmm

Shawn looks great his throat is a little raw but it hasn't stopped him from ordering his food, he's starving!

Thanks for all of your well wishes, support and prayers!

Oh Damn these Holidays

My poorBabe, he was admitted. You know when the pager went off I knew it was too soon. They went in and sure enough something is going on at the seam. He knew there was something flopping around in there, he could feel it and you could hear it. They couldn't clean it up.

Thank God he kept bitching about it because he wasn't scheduled for this bronch until the 24th or 27th. There were a lot of secretions, could be pneumonia, could just be that they couldn't get past that "misjoint". They took cultures put him on IV abx for now and tomorrow he will go into the OR so they can put him under and his surgeon will hopefully go in and fix things up. I guess we'll know more after the surgery. They'll take biopsies then too and check for rejection. I guess it doesn't look like rejection whatever the hell that means.

I'm glad he went out for his ride yesterday.

It's alright, he is where he needs to be and we'll get through this.
Thanks for the support guys, I am going to bring Shawn in the laptop so he'll probably be in chat tonight. I hope so.

Bronch and Biopsy Today

So here I am waiting in the family area once again. I don't mind at all.
Shawn is having a bronchoscopy and biopsy upstairs. Today he is exactly 12 weeks out of transplant. They usually schedule a bronch/biopsy for three months anyway so this is really perfect as far as I'm concerned.
They had scheduled it for Feb 27th, but he has some weird coughing going on so they bumped it up to today.

I don't know what is normal and what isn't for transplanted lungs so it could be totally nothing. His new lungs sound different, than an original healthy set, like mine so I don't really have a clue.
He had this weird flapping sound like a valve opening and closing for a couple of days, which the doctor thought might be a "shaggy" airway. I guess where the new lungs meet the old body, there is an overlap of tissue that eventually sloughs off, so maybe it was a hanging piece of tissue. That sound is gone now and he just has a cough, not a bad one, not constant and not productive but it sounds irritated.

Shawn's transplant has a history with Holidays, as you know he was transplanted on Thanksgiving and we got the call that he was experiencing rejection on New Years Eve so Shawn is wary because tomorrow is Valentines Day, oh that would really be too much so lets hope the biopsy shows no rejection.
Well lets hope there is no rejection anyway.

I know that rejection is always a possibility and I know that it is not unusual in the first year, but I don't want him to have anymore. Thanks but no thanks.

Well it is in Gods hands and whatever the outcome it'll be o.k.

He's got Meds !

So after an hour and a half on the telephone, driving into Boston, chasing down the social worker, harassing his poor pregnant NP, and hanging out for four hours at the in-house pharmacy he has his meds! Thank God. Yes it was a pain in the ass and yes Shawn nearly blew his top, but he picked up around $1500 worth of meds for $35. How can we not be totally grateful? Phew...I'm glad that is over.

He has some weird thing going on in his lung, when he breathes in and out it sounds like a flap is opening and closing. His O2 sats are fine, no SOB, no pain, no increase in sputum, but a nagging non-productive cough and that weird sound. The doctor thought it might be a "shaggy" airway, I guess where the new and old meet there is a bit if overlap, and that tissue usually sloughs off and is coughed up I guess. So the bronch and biopsy that was scheduled for Feb 27th got bumped to this Thursday.


In other news Shawn's benefit is taking off, tickets are selling well and we're aiming for a sell out.
It's super exciting, a lot of people are working really hard and pulling this all together.
I can't wait!


I have to say I've been thinking alot about Jenn. Jenn is a friend of ours that we met through our online Cystic Fibrosis community. She passed away suddenly and it's just so unfair. She was trying to get ready for transplant, she needed a double lung and liver transplant, but she didn't make it. I'm sure she didn't see it coming, she had just finished making this beautiful pink afghan for a baby shower, she had plans.
Her funeral is this Friday. What a fucking shame.

Be grateful for everyday that you have the privalege of walking around on the face of this earth, sitting in traffic, worrying about bills, and all the bothersome stuff. You can see the sun shining and you can love.

Just about me today

Well since I've received some positive reinforcement re: a "me" post, here goes nothing.

I'm tired. My mind is trying to drag me in a million different directions and I'm fighting it. We're broke, but I don't care. I'm not even broke by some standards, I'm filthy rich to someone, I'm sure.
So it's all perspective right? Half empty, half full.
I'm half full. Half full and that is just fine with me.
I'm making some big decisions here, I'm making them because someone I love very much is incapable of letting go. Letting go of "stuff".
I'm not a stuff person. Never have been. If I have clean clothes, food in my belly, a book or two, some classical music, maybe a plant, a shitbox to get from point A to point B, somewhere clean to lay my head at night I'm set. Everything else is free right? My husband, my daughter, the air we breathe, the pure beauty that nature is, the sounds of the ocean, the birds, laughter, free free free.
Maybe that is overly simplistic but it's the gist of it.

I have longed to live the simple life my whole life. I was able to do it...between husbands. Hahahahahahha. That's terrible to say but totally true. (my ex left when I was 6 mos preg, please no sympathy folks it was truly a Godsend! )
When I was just living for my daughter and I. My pregnancy was a huge awakening for me. I was truly on my own. I was determined to do it to the umpteenth degree. I wanted to start our new life with a totally clean slate, literally. My unborn child and myself were the center of my attention. I had never had that in my life. I was always living according to someone elses rules and ideals. When I spoke up I was the kooky one, I was nutty, I was way out there. But HA, finally I was at a point where I didn't care, I was going to make decisions with my own divine wisdom.

I did and you know what I made some really good ones. I chose to do things in a "pure" way. My pregnancy was natural ( no artificial ingredients), my dgtrs birth was natural, very slow (29hrs) and pretty painful but natural none the less, I nursed her, used cloth diapers, only organic cotton and usually second hand clothes, everything I did with her I tried to keep as "clean" as possible. I figured if I could keep her as natural as possible her body would do the rest. I also knew at some point she would make her own decisions and I wanted to teach her to make educated ones. She had a homeopathic/MD and to this day, she will be 13 in Nov, she has only been on abx twice. That was when I was in nursing school and bringing home loads of cooties.

So blah blah blah....the point is I am hoping to return to those roots. Back when I saved my money in a jar, when I walked everyday, and read and sang.
Back when a vehicle was just that, a vehicle.