Aug 12, 2012We had been in Durham, NC for three Sundays and our ward had been nothing short of amazing to us—welcoming us to the area before we even arrived and searching for ways to serve and befriend us the minute we came into town. Moving to, literally, the other side of the country was scary and hard (yes, we've been over this before) but finding such good people waiting for us made all the difference. Anyway, it was Sunday, we were at church, and a clipboard was passed around the Relief Society room for the annual Pig Pickin on Sep 15 (apparently this is an annual thing for a lot of people in North Carolina). What's a Pig Pickin? I didn't get a chance to ask, but I saw a blank beneath Baked Beans.
Ehh. It's in the middle of September. Jas will probably be in the hospital and I'll probably just have to call and say I won't be coming after all. And if not... I like Baked Beans. I'll get my mom's recipe.
I signed up.
Aug 28, 2012
Jason was notified that he was officially listed for transplant (you can read about that here).
That night I gave Jason a card with a love note inside.
When I saw this card I was struck by the symbolism of the phrase. It has since become our little family motto of sorts. "I love you to the moon and back."
We were informed that it wouldn't "be long at all". So we told our family and Jason's parents came the next day. After a week of waiting Brad (Jason's dad) went back to Idaho to work and Tami (Jason's mom) stayed with us in anticipation for the transplant.
Sept 11, 2012
It was in the afternoon and I was drying off from a nice, warm shower. There was a rap rap rap on the door and Tami's voice, "Geri, Jason's on the phone... It kind of sounds like it might be the call?" I finished drying and walked out of the bathroom to see Jas sitting on the sofa. This didn't seem like a normal "call" conversation.
Jason hung up the phone. It was a nurse wondering if Jason would want to participate in a study. There was a lot of "lung action" happening, so he would come to our apartment for Jason to sign papers as soon as possible. Once we had digested this news I realized I had been standing in the middle of the living room in my towel.
I put on some acceptable clothing. The nice nurse man came, said he wouldn't be surprised if we got a call later that afternoon or possibly the following day. Jason asked for the date as he signed the paperwork. "September eleventh," the nurse man said.
I gasped, rather loudly. "Oh. Sorry, it's just... that... I didn't realize... Interesting day."
For some reason I really didn't feel ok about a surgery on that date.
I shook it off and put on mascara.
Sept 12, 2012
There was an incessant noise interrupting my dreaming... a digital singing. It sounded like Apple's ringtone. The phone! It's the phone! What time is it? 250 am. 250 AM! I shook Jas, tapped his shoulder, "The phone! Get the phone!" He picked it up with a groggy hello, said some single or double syllable words kind of like: "Ok. Yes. Ok. I will. Ok. Thanks. Bye." We sat there for about four seconds.... Was this it?
We scrambled up to get ourselves together and shake off the sleep. I woke Tami (Jason's mom) and called my mom to let her know we were headed to the hospital.
The getting to the hospital is a blur of red stoplights and valet parking at the ER and a maze of hospital hallways. Once we got into the little room it was 315 AM and the prepping began. In between nurses and tests we dozed and "slept" in a very small, very chilly short stay room. 700 AM we still hadn't heard from the surgeon, after a very long night. Should I text Leah or Amy or Lindsay to let them know we were at the hospital and wouldn't be at the Pig Pickin Saturday? 755 AM we received another call. The surgeon, who was at the donor's OR, after testing and viewing the lungs had determined them not viable for transplant—the lungs were not good enough.
900 AM go home, go about your day as usual, try to take a nap and hope to get a call again soon.
Nobody passed out or had a panic attack... so I'd say that was a win.
Sept 15, 2012
Baked Bean aroma filled the apartment.
Nobody was in the hospital today, looked like we were headed to a Pig Pickin.
When we arrived I was much relieved to not see a rotating pig on a spit or one laid out on a table (I asked a checkout guy at Target and he filled me in on the tradition). Somebody told us this was "not a real Pig Pickin. Hopefully next year you'll get to see the real deal." I said "Yeeks." But the bbq sauce was fantastic.
There were lots and lots of questions about transplant stuff. When will it be? We don't know. How long do you have to wait? The average is 17 days, but probably longer, or maybe a little less... we don't know. How long will he have to be in the hospital after the surgery? Depends on the patient and how he does, we don't know.
There's not a lot to know in this game. Sorry. But thanks for playing.
Sept 16, 2012
We were almost finished getting ready for church at about 1:30 that Sunday afternoon. I heard a phone ringing, it wasn't mine. "Hey Jas! You're phone is ringing!" I found it on the table in the living room, caller ID said Unknown. Hmm.
Jason answered it. After only a moment I could tell this was another call.
They told us that the surgeon would be going to the donor's OR shortly, there was another transplant in progress at that moment (I guess these transplant things run in multiples), if Jason could get to the hospital within the next hour or two they would start preparing for transplant. Yeah yeah... we knew the drill.
I finished curling my hair. Jas took a bath. Tami packed us a sack of fruit and snacks. We all changed out of our church clothes and Tami and I put on our Team Jason shirts. We loaded our bags a second time and got in the car.
Once we got to the pre-op room we looked at the clock. 3:15 PM. Weird. The last time we were in a prep room I swear the clock said the same thing. We made ourselves at home with some Phase 10 and college football games. The clock kept ticking along. Jason filled out his Living Will (which I strongly suggest anyone going through a large surgery to do prior to the actual event). And there was more waiting. By midnight we had watched a few episodes of Storage Wars and were a little bit sick of waiting... At about 12:55 AM, in the middle of another episode of Storage Wars, Jason's phone rang.
The next part of this story will be told primarily with texts and FB updates—mostly because it's all a hazy blur for me now.
Text to family: Sep 16, 1:37 PM
We got a call so we'll head into the hosp in the next hr and we should know if the lungs are a go later tonight.... So no announcements yet—we'll keep you posted :)
Text to family: Sep 17, 1:00 AM
Just got the call from the nurse coordinator The lungs look good. It's a go! The nurse will come get him in a bit.
Jas is getting lungs tonight. And oh my racing heart... I love this guy. He's my favorite person.
FB update: Sep 17, 2:45 AM
Jas was just wheeled back to the OR. It will be avery long surgery (around 9 hrs)... We should get a couple updates throughout the wait.
>> as they wheeled him back on the bed all I could see was the top of his red hair and his hand from the wrist up as he waved and gave us a thumbs up. I knew his heart was anxious and racing, I knew he had to be terrified—but he was still my sweet buddy, being cute and funny as they took him back to the OR to begin something so huge... something we never could imagine actually happening. this shook me and I felt the room spinning and all I could hear was myself screaming inside my head. me and Tami hugged and cried for a minute, then ventured out into the waiting room.
So hosp lights never turn off. But I MacGyvered a magical floral hobo fort w the umbrella in my purse.
>> our friend Clark came to find Tami and I when he finished his shift that night (er morning?). he said he couldn't find us. I said, "Oh that's probably because I had a floral umbrella on my head." He said "I did see a floral umbrella... I didn't want to disturb whoever was under it." I don't know why, but this still strikes me as hysterical.
FB update: Sep 17, 9:33 AM
Update from Geri just now: Jas was wheeled back at about 230. They called me at 425 and said they had started the surgery. And just got an update from them "team is still working". So far so good! Keep on praying!
>> all of the updates were like this. I would get paged every two hours to go up to the nurse's desk and she would say, "You have a message from the OR." I would nod. "They are still working." The first time I didn't get it... I said "Ok, what's the message." "They're still working." "Ok, so what's the message?" "The message is: They are still working. That's the message." "Oh—ok." It was 6:30 AM after close to zero sleep and high stress—give me a break is all I'm saying.
FB update: Sep 17, 11:25 AM
Latest update: they are almost finished. Next update will be talking to the surgeon.
Photos taken during that last bit of waiting....
>> I believe I remember asking someone to pass me a Diet Coke. Wait. Yes. Yes I did. It was on Instagram/FB (and three days later the most awesome Relief Society President in the solar system brought us dinner... with a six pack of Coke Zero. Leah, if you're reading this, I heart you).
FB update: Sep 17, 12:18 PM
Update from Jason's sister: The surgery's done. His new lungs are in! Geri and my mom should be able to see him in the ICU in about 45 minutes!!!
FB update: Sep 17, 2:10 PM
Geri here: we just went into the ICU and saw Jas. He's still sedated and will be for about six more hrs. Not totally out of the woods yet... But the lungs are in and he looks pretty good to me. Should know more in a few hrs.
>> they tried to warn us before we went in there that he would be bare-chested, high temp, cold sweats and have a massive amounts of tubes coming from his body. Tami told me to picture the absolute worst in my mind so it could be better than that. I did, and therefore wasn't shocked at the sight. but it was still disturbing to see my man with tubes in the side of his neck, five tubes in his chest, tubes coming from the high upper thigh area (that part was covered, I saw them coming out from under the sheet), IVs in both hands, and a big one shoved down his throat.
FB update: Sep 17, 9:41 PM
Geri again: We just left the hospital after seeing Jason. He looks so good and the nurses are excited that he is doing well. He is not so heavily sedated now, he is breathing on his own—once they get the epidural in for pain management they will be able to take out the ventilator and the central line. Hopefully by morning he will be sitting up in a chair and then up and taking a few steps. The sooner he walks the better.
So grateful for these lungs and watching his chest and belly rise and fall with a deep, full breath.
So grateful for a wonderful donor and fantastic surgical team.
So grateful for all of the encouragement, love and prayers—it has helped more than you know.
So relieved and can finally relax a little bit after a very stressful 32 hrs.
Sneaky ICU photo from Brad's phone via text: Sep 17, 11:00 PM
FB update: Sep 18, 12:34 PM
Jas is doing so great. His nurses are calling him their Rockstar. He's already walked a lot today and they're talking about moving him to the step down unit later this afternoon. Still so much recovery to go... But it's truly amazing he's doing so well up to this point.
>> I visited him in the ICU at about 9:15 that morning and by that time he had already walked 1500 feet. Everyone was doting on him and his dopey little self was sure enjoying it. When a new specialist would pop their head in the curtain and introduce themselves he would say "Hi I'm Jason and I'm doing really great! I just had a transplant yesterday." And they would smile and nod and say "Yes, I heard! You ARE doing great!"
FB update: Sep 18
Jas is out of ICU and in his room now. Doing miraculously well, super dopey from meds but super good. They did a bronch and said "the lungs look beautiful".
Text to family: Sep 19, 11:26 PM
Update is we walked like crazies today w/o any O2 (40 laps around the unit total). Got rid of 3 chest tubes (2 left). Brushed his teeth. Had a blood transfusion (the meds work on the bone marrow, so a transfusion every now and then is part of the deal). Cracked some jokes. Had a bronch, still looks good. Had a swallow test, passed the thick nectar drinks and the cookie—so now he can have thickened liquids (but no cookies cuz he didn't pass the pudding or the thin liquids). No diabetes so far. And now going to go to sleep.
FB update: Sep 20, 10:59 PM
Gerl here! Third day out of transplant was kind of hard, but he's still doing great. He can eat thickened liquids which makes this guy super happy (huge blessing). And he got the scary tube out of his neck, among a few other tubes in various places.... which is a plus :)
>>yeah, I spelled my name wrong. it had been a very long week. or a very long year.... either one.
FB update: Sep 22, 10:38 PM
Geri again: Just waiting on two chest tubes (there is still some fluid draining from the lungs) and we can break Jason out of the hospital! Plan is for Monday... but hospital plans almost always change.
Jas has been recovering better than ever expected—today's PFT (pulmonary lung function test) was 67% (he was around 22% pre transplant) which is remarkable! And he walked 101 laps around the unit
today (the prerequisite to going home is 20, 18 is a mile). He's sick of being in his room and antsy to move around... that means he's feeling pretty good and ready to get on out of here. Yay!
We really are seeing miracles everyday and so grateful for your support and prayers. Thank you again. And again and again.
Text to family: Sep 24, 4:48 PM
Outskies. He's doing good.
FB update: Sep 24
Jason is home tonight... and filling a giant pill box with new pills and not wearing any oxygen. Labs at 730 in the morning and back to rehab tomorrow afternoon. Lots of recovery to go. Bring it on!!
Look who's home!
Sep 27, 2012
We just got back from our evening walk and are about to turn on a movie, then we'll go to bed. No two hour breathing treatment needed. But not before a few more IVs and checking blood sugar and taking pills right on time and cleaning the cannonball wound. Every day seems to be a little better than the one before. We're planning on a few steps forward, a couple steps back.... But oh! How can it be? We thank our Father in Heaven every night for this blessing of life. We are so excited to no longer be waiting, but to be recovering and to live it.
"And now you know the rest of the story."
(If not familiar with him, or even if you are, here's a good Paul Harvey story.)