My Moments to Breathe

Tuesday, November 18, 2014

LUNGIVERSARY



Today is the day! I am 1 year from this very day that this wonderful gift was given to me. A shiny, blinged out, only blows glitter, pair of lungs. I will not even begin to count the number of times I have cried today. I started to count but have already stopped because all the texts, messages, phone calls, cards, posts, well they all make me cry. A wonderful, crazy, mixed emotion sort of cry.

But in honor I thought instead of hearing me write on about how excited I am (that can wait until tomorrow and the week of celebrating) and things that I sort of maybe remember...I decided to hand over my blog for the day. I gave it to the person who was with me from the moment the phone rang to, well, the person who is still by my side. I thought this person needed to write how it all went for him, his feelings. So here we go. Presenting...Jeremy Jon...



I was groggy.  We had taken a family nap. 

We took a lot of family naps.  Cassie was tired all the time.  When she wasn’t sleeping, she was on her oxygen more and more—and when she wasn’t, I was telling her that she should be.  Even dropping her off at the door for things like Wal*Mart and church (yes, we live across the street) wasn’t working anymore.  Those “exciting” outings took too much out of her and she would have to relax, use her oxygen, and, eventually, fall asleep.
A few months earlier we got together with the Husbys at a condo in South Haven.  Cassie spent 90 percent of the time in the room, sucking down air.  My mom told me afterwards that when the MI Husbys got back to the east side (the RIGHT side) of Michigan, the prayer chains started.  They saw what I was seeing every day.  Cassie was dying.  She was not breathing.  She could not keep this up.

So, yeah, Laila and I got to do a lot of things together.  And, no, I wouldn’t trade it.  I’m positive that having that daddy/daughter time while mommy napped or relaxed is why Laila still has her days where she follows me around and completely ignores anything Cassie does or says.  I love it.  But, still, there were times, particularly on Sunday afternoons (I know I only work one day every three weeks J, but when I do, preaching takes a lot out of me!), where I needed my rest, too.  So, Cassie in bed, Laila with her, me on the couch, we took a nap.

We were trying to figure out what to have for dinner.  It was snowing.  I didn’t want to trudge through the snow to start the grill, even though we had steaks thawed in the fridge.  That meant a tiring trip to the grocery store.  That meant me cooking.  That meant me washing the pots and pans and the dishes right away afterwards because I’d have a busy Monday and wouldn’t be able to get to them for a couple days…plus I was out of underwear and undershirts.  We decided we’d go out to eat instead.  And then it happened.  Cassie’s phone rang.  She looked. Lungs.

It’s gonna be ok, Cass.  Step one, I’ll call Marquardts to see if they can take Laila.  I remember trying to explain like 6 or 7 different things to Mike and then realizing I wasn’t making any sense.  Can I bring Laila over now?  Look back at Laila and Cass.  Laila is running around and jumping all over the place.  She’s singing about how her mommy is going to be able to run with her.  God, I hope so.  Don’t cry.  Be strong. Go hug your wife.  She’s gotta be going crazy.

Ok, Cass has her transplant bags ready.  I need to figure out what I am going to wear, knowing that it is cold outside, but I’ll probably be inside for the next three weeks.  I just need something comfortable to wear that won’t make me sweat, that I can wear for about the next 36 hours.  Stop focusing on this silly problem.  Go hug your wife.  She’s gotta be going crazy.  It’s gonna be ok, Cass.  I promise.  Jesus promises.  It’s gonna be ok.  I love you.

Remember your wallet.  Remember your phone and your charger.  Grab your laptop.
We got in the car.  It was snowy.  I called my mom.  Don’t cry.  I called my brothers.  Don’t cry.  I called my fellow pastors. Don’t forget to drive carefully…

We arrived about 90-100 minutes after we got the call.  It usually takes about 90 minutes…but somehow we got packed, took Laila next door, and still got there in the same amount of time.

We got there around 6 pm.  They said surgery was planned for 9 pm.  Yeah, right.  Ok, surgery is now planned for 10:30.  Yeah, right.  Ok,midnight at the latest.  Yeah, right.  They poked and prodded Cassie.  Hug her.  Tell her everything’s gonna be ok. 3am.  Time to go to surgery prep.  We went down.  Everywhere we went, there was NO ONE around.  It looked almost like a Walking Dead hospital.  Lights in hallways were only halfway on, if on at all.  Went to a prep/waiting room.  And boy, did we wait.  Alone.  No nurses checking in.  No Dr. DeOlivera saying everything was ready.  No nothing.  Just me and Cass.  Talking.  Silence.  Tears.  Talking. Tell her everything’s gonna be ok.  Smile.

We took silly pictures.  We looked at the clock…a lot.  Then, finally, around 6:30—a nurse!  We said good morning and she about jumped out of her crocs!  She was just there to weigh herself while no one was watching.  She didn’t know anybody was down here.  She’d check in to see what was going on.
7 am came.  They took Cassie.  Don’t cry.  Smile.  Make her think you’re confident.  Make her think you are unafraid.  If this is the last time you see her, make sure that she knows that you love her or you’ll regret it every. single. day. for the rest of your life.

I made sure they had my cell number.  I’ve given them that cell number 20 times.  I give it again.  To three people.  I go get another coffee.  And another. 

Last time, it was about an hour and a half in when Dr. Maloney came and told me the surgery didn’t happen. I looked around.  8:30.  Nobody.  8:45. Nobody.  9am.  My phone rang.  Surgery started about 20 minutes ago.  What?!  It’s actually happening!!  Call your parents.  Call your inlaws.

Facebook, Twitter, and Email.  7 hours of updating TONS of people (NOT complaining.  I was overwhelmed with how many people cared).  I counted 70 emails—just from the kids at school.   About every 90 minutes I’d get a call.  One lung in.  One lung in?! They took one lung out and put another one in.  How does that work?! More coffee.  Second lung in.  I cried.  I was walking to get an energy drink and I could no longer see where I was going.  They put new lungs in my wife.  I updated.  Constance texted me back.  I sat down.  I texted back.  I was overwhelmed.  I couldn’t function.  I couldn’t see anything.

Around 3 they called again.  They were closing her up.  It was successful.  I was going to meet with the surgeon and talk about how it went.  So I updated and then I went to the waiting room.  And then I waited.  About 4:30, Cassie’s dad said he arrived at the hospital.  I met him and we walked together toward the waiting room and, on the way, ran into Dr. D.  He smiled.  That’s a good sign, right?!  The three of us went into the waiting room.  He talked.  I listened.  I tried to process.  I tried to think of good questions.  Over and over Dr. D said that everything went really, really well, but, we can’t get excited yet.  Things WILL go wrong.  Be prepared.  Stuff WILL happen that is unexpected…expect it anyway.  One thing in particular (make a mental note of this, this is gonna be important) that Dr. D is not worried about, but will keep a close eye on, is that she is draining a LOT of dark red thick sticky blood.  They’d like it to be a little more translucent…a little more watery and pink.  But not worried.  Again, set backs WILL happen. My father in law and I, both at about the same time asked the important question…CAN WE SEE HER NOW?

We saw her.  We wore gowns and gloves and masks.  I told her I loved her.  I told her the surgery happened.  I told her everything went well.  I watched as 4 different nurses were checking 40 different things and realized that the best thing for Cassie right now was for me and Cassie’s dad to be out of the room.  We exited.

“You ready for a beer?”  What?! Am I ready to drink?  My wife just had major surgery and you want me to drink?! And then it made a little more sense.  It was time to celebrate.  It happened and it went well.  Not to mention that, amid all of the coffee and energy drinks, I forgot to get food in my belly too.  My tummy started to rumble.  I excitedly agreed.  We gave my cell number…again…and we left.  In the car, we went over everything that Dr. D said with a fine toothed comb.  We couldn’t find anything in what he said to worry over…except that she was draining too much dark red thick sticky blood.

I ate.  I drank two big beers.  My nerves calmed.  My adrenaline went back to normal.  It was time to, finally, sleep.  I got gowned, gloved, and facemasked.  I told Cassie I loved her again.  I told the nurses my cell number…again…and told them where I would be sleeping.  It was9:30.  I fell asleep.
At 1am the light in the room turned on.  “Jeremy?”  Check my phone.  1 am.  No phone calls.  30 emails.  I asked the nurse what was up.  They had called.  They needed to take Cassie back into surgery.  There was too much dark red thick sticky blood draining.  As we walked back to Cassie’s room, I tried to process what she was saying.  They were going to give her a “wash.”  They had to open her back up and “wash” through the area to make sure that it would drain the way they wanted it to drain.  I was confused, to say the least.  They were going to take her in 15 minutes.  God, NO! She made it through.  Do NOT let her die NOW!!  How serious is this procedure?  How long will it take?  Explain the process again? That didn’t help. This very kind, pretty nurse, for the third time, explained what was going to happen.   I still don’t get it!

“Listen, I know you are doing your job, and you’re doing a great job.  I just need you to tell me, should I be calling my inlaws to get back here?  They are in Lake Mills.  Sleeping.  Should they be here for this?”
“Well, Jeremy, really that’s up to you.”
“Listen again…uh..well…ok fine….Is my wife going down there to die!?”
“No.”

So I went back to the room.  I chose to let Zells sleep.  I opened my bible.  I laughed.  Someday, picture yourself waiting while your spouse is in major surgery and read the first 90 psalms.  It is insane how much of it had a direct correlation to the feelings I was experiencing.  I laughed.  God knew what he was doing.  He is in charge.  We should fear, love, and trust in God above ALL things.  Never in my life did Luther’s explanation to the 1st Commandment mean so much to me.  Trust in him above all my feelings.  Trust in him above all the medical jargon.  Trust in him above the days and weeks and months of Cassie dying.  Trust in him above all things.  Recognize his almighty power…power he promises to use for your good.  Love him.  Love his care and concern.  Love his providence.  Love him for the fact that no matter what happens in the next 4 hours, you and Cassie (and Laila) will eventually be together forever.

They knocked again around 6.  Procedure done.  It went so well.  Cassie is resting.
I wish you could have seen the difference that I saw between post surgery Cassie and post wash Cassie. 
They put a 5th (!!!!!) chest tube in her tiny torso, but out of each one of those tubes was trickling tiny drops of watery, pink drainage.

My wife had an excellent surgeon.  She had a superb group of assistants (other docs and nurses).  She had a donor family that made a loving, kind, and selfless decision and gave my wife the best present that she could ever receive in a time when their hearts sank in sadness and grief. 

Today, November 18th, 2014, my wife woke up and got Laila ready for school.  As I’m writing this, she just got back from driving, out in this wonderful 9 degree weather, to get Laila’s favorite lunch from Panera.  She’s going to walk over to school and sit with her 5 year old and laugh.  And then she’s going to come back home.  She’s going to finish up some laundry.  She’s going to wash some dishes and tidy up the house a bit.  We are going to go out to eat tonight to celebrate.  And then, tomorrow, she’s gonna do much of the same…because she can.  Because she can breathe.
Psalm 30
1 I will exalt you, O Lord,
for you lifted me out of the depths
and did not let my enemies gloat over me.
2 Lord my God, I called to you for help
and you healed me.
3 Lord, you brought me up from the grave;
you spared me from going down into the pit.
4 Sing to the Lord, you saints of his;
praise his holy name.
5 For his anger lasts only a moment,
but his favor lasts a lifetime;
weeping may remain for a night,
but rejoicing comes in the morning.
6 When I felt secure, I said,
“I will never be shaken.”
7 Lord, when you favored me,
you made my mountain stand firm;
but when you hid your face,
I was dismayed.
8 To you, O Lord, I called;
to the Lord I cried for mercy:
9 “What gain is there in my destruction,
in my going down into the pit?
Will the dust praise you?
Will it proclaim your faithfulness?
10 Hear, O Lord, and be merciful to me;
Lord, be my help.”
11 You turned my wailing into dancing;
you removed my sackcloth and clothed me with joy,
12 that my heart may sing to you and not be silent.
Lord my God, I will give you thanks forever. 

Tuesday, November 11, 2014

Its November!



Has it really been that long since I blogged? Well, you can all assume that no news is good news right now. I am still doing very well. I have been keeping myself pretty busy around here.

Cold season is here so I am trying keep it out of my house and out of my lungs. They are still doing blinged out and I am still blowing high numbers on my spiro. My weight is still up, my shakes are still on and off again, and my sleeping is still well, not there. My face still has aged about 20 years over this last year.

Yeap, its been almost a year since I was blessed with the gift of new lungs, oxygen, and new life. Jeremy and I still talk about it at least once a week. This week we talked about how tramatic of a thing we went through. I got to hear the parts that he personally were the worst. I got to tell him what the worst was for me. He wins this round, I slept through most of the scary parts HAHA!

But all month we have things lined up to celebrate, starting with the actual date (Next Tuesday...the 18th) and I am not sure how I am going to make it through everything without tearing up each time. I have said it a million times this month but I will say it a million times again...I am blessed. I got my miracle in a miracle. 

I am able to tell my story (was asked to do a talk in Lansing, MI a few weeks ago and now am lined up to talk to a group on Nurses in March) and not cough during it. I can go to Walmart and put the groceries away. I can wake up in middle of the night with Laila and not cough for 3 hours after. I can eat like a normal person and keep weight on easier. I can work. I can travel. I can walk across my house. I can carry Laila. I can laugh with Jeremy. I can keep up with my family. I can live. All those things I can do where as last year at this time I couldn't, I was dying and planning on how to get things accomplished before that time was here.

"I  still forget how sick I really am. I wonder if I need to give in more and just decide that this is the life I have right now, dying." This was part of my blog entry on Nov 10 from last year. I look at it now and wonder how I didn't see how sick I was. I was either just that naive/dumb or just that much of a stubborn German who kept up her fight....you can decide for yourself. But either way you decide, I was glad at the time that God made me what I was, because it got me through what I needed to get through.

Thank you again to all those who have so graciously helped me with whatever it was my family needed help with. Whether it was a meal, a good laugh, watching Laila even for that little hour so I could breathe, taking her on her "forever stay", cleaning, gardening, donating to Team Cassie, praying, writing encouraging words, or for even my little penny on a post-it-note. THANK YOU THANK YOU THANK YOU! 

Hope you all have a as much of a great month as I am about to have. LET THE CELEBRATING BEGIN!!