The Surgery

After we got the call from Hopkins, we finished driving home and put away the groceries we had just bought. While we waiting for Rachel's parents to get to our house to pick us up, we frantically packed up anything else we thought we'd need besides our pre-packed "transplant bag" of clothes. We left around 9:15 Friday night and drove down to Baltimore with Sam and Karen. When we got there we checked in and Rachel was sent up to cardiac ICU to get settled in a room. Her parents and I waited for an hour while the staff got her into the room and set up on some IV's. By midnight we were able to go back in a be with her. After visiting for a while her, Sam and Karen went to the waiting room to sleep on the less-than-comfortable chairs. I was lucky enough to get to share the hospital bed with my wife. it's times like that we thank God that were both such small people... Needless to say I didn't really sleep, but rachel did get some rest. During this time the doctors were at a different hospital, performing more tests on the donor lungs to make sure they were a perfect match.

All this time too Rachel's sister, Mary, and her husband Peter were trying to get a quick plane out of Boston to see her before the surgery. By the grace of God a flight was delayed and they were able to board one leaving around midnight and got to the hospital around 2:30 or 3am. Rach and I spent some time with them and her parents in the morning before the doctors came in to take her back for surgery.

After going through some final consent forms and reminding us of what the next 24-48 hours had in store for us, they came to take her in. I held her hand walking down the narrow hallways leading to the operating room. The anesthesiologist who was helping to push the bed said "I've got it from here" but I would let her go. We walked past the waiting room where Rachel's family was and the doctors stopped for all of us to kiss her and sent her off for the surgery. Anyone who's had to watch someone they love go in for a surgery knows this feeling; the helplessness of not being there, but the hopefulness of knowing what's in store, and Who's taking care of her.

About an hour later one of my best friends Jonathan Ellis showed up. Jonathan lives in North Carolina and drove up all night to be there to wait with me. An hour and a half later the doctors informed us that they had "made the incision." This meant that the lungs were close by and we were close to the time of the actual transplant. Shortly after this my parents and two sisters got there to wait with us, and not too long after, another one of my best friends Nathaniel Gayle arrived. Jonathan E., Nathaniel, and I had grown up together and having them and my family there with me was incredible. While standing out in the hallway Nathaniel pointed out a wheelchair being rolled past with several boxes on it labeled "Human Tissue" and he saw the one box labeled "Lungs." They were here.

A half hour later we got the confirmation call to the waiting room that the lungs were here. Just after lunch the nurse overseeing the waiting room called back for a check in on Rachel's status. Her report? "The lungs have been placed and are about to be sewn in." By now I was having a bit of an out of body experience due to the stress and lack of sleep, but this still gave me a renewed since of hope for the outcome. We continued to wait in the room, which was starting to look like a family reunion with all of us huddled together praying for Rachel and sharing humorous stories from growing up to ease the tension in the waiting area. As per Rachel's request I posted facebook updates to keep all of our friends updated on her status and what to pray for. Every time I posted I'd see tons of comments from people letting us know they were praying. I know our story has been followed by a lot of people, but I had no idea this many people were touched by Rachel's and my journey.

Before long Dr. Shah (the transplant doctor) came in to tell us that the lungs were in, and they had finished the surgery. He said that the new lungs were "gorgeous" and the old ones were "crappy, and now gone." He explained what was going to be happening next, then told us to watch for Rachel as she passed by our area on her way back to ICU. 10 minutes and lots of tears later my baby came down the hallway with her new lungs. A ventilator was breathing for her, but I knew she'd be doing in on her own before long. So 7-8 hours from the time she was taken back, it was finished and a huge success so far.

After an hour I was allowed to go back to ICU to see her. She was still asleep, but doing great. My family and friends headed home around this time. Rachel's sister and I went back to see Rachel again and as we talked to her, she would nod her head to acknowledge that she heard us, it was amazing. We let her rest as Rachel's family and I went to check in to a hotel to take a shower. During this time the doctors started weaning Rachel off the anesthesia  and put in an epidural. They were trying to wake her up to make sure that she was responsive and no blood clots had gone to her brain. When we got back to the hospital at 8:15pm we went up to see her again. She was awake, but still couldn't move much at all. She couldn't move her head, but she began hitting her hand on the bed to get us to look at it, she pointed back at me and made a walking motion with her fingers for me to walk to the other side of the bed so she could see me. When I got there she signed into my hand "I love you." I lost it. It was like hearing her say it for the first time. She continued to sign using fingerspelling to talk to her parents and me, saying that she was thirsty, and that no one is allowed to talk about Mountain Dew, haha. Her dad and I were holding her hands when she started to sign something. I was saying her letters out loud since I couldn't tell what she was saying. Finally we figured it out. "I need three hands." She wanted to feel her mom's hand as well. It was like something out of a movie. Up there with our wedding, that moment with her signing like that was the one of the greatest moments in my life. We let her rest, then went down to a pediatric waiting area that has some benches and slept there for the night. At 1:30am this morning I got a cell call from the nurse that they had taken the breathing tube out and Rachel she was breathing on her own. We rushed up to see her, thew on all of the gloves, masks, and gowns and went in. She was awake and able to talk. She said that she's not in a lot of pain, but a little uncomfortable from one of the pain meds. Rachel also said that taking her first breaths on her own were terrifying, since she couldn't actually feel the air going into her lungs. They're working great though, and Rachel is doing incredible. The doctors not only think that the new lungs are perfect, they even said that this is probably the best transplant they've seen at Hopkins.

Sorry if this post is lacking in any details, I'm still a little sleep deprived and anxious to see my wife again. Keep checking my facebook for quicker updates and I'll post another blog soon too.

Continue praying as Rachel faces another hurdle today: the swallow test. She has to relearn to swallow liquids just like she had to relearn to breathe. Pray that all goes well and she can get back to chugging Mountain Dews before too long...

God is good.

- Jonny

The Call!!!

We just got the call! We are excited and can't believe it. Please say some prayers for us!
Love,
Rachel

Bunny Trails

I’m going to apologize in advance. There seems to be a lot on my heart so I’m going to try not to get off on too many bunny trails, but no promises!

The first thing I want to say is that God has given me the most incredible husband. Everyone keeps telling me how great he is and how blessed I am to have him…believe me, I know. I cry…a lot…I just do. 99% of the times it is because I am so overwhelmed at how great my Jonathan is. I know I’ve said it before, I wouldn’t trade my life for anyone else’s because only Rachel Slick gets to be married to Jonathan Slick. I treasure that so much. And I think he is such an amazing example of what true, selfless love is. He has attached himself to me and if you ask him, he would say that we both have CF. And the most incredible thing to me is that I never asked him to do that. He wanted it. I don’t understand why, but I am so thankful. I love you my Jonnybear.

This wait is getting long. 109 days so far. I think I kind of know how it feels to be expecting a baby. There is this long time of being uncomfortable, being tired, lots of doctors, feeling excited, feeling scared, feeling everything at the same time…always knowing that there is an event that is going to eventually occur that will be awful and terrifying and dangerous…but in the end your life is going to change. God is going to bless you and He is going to do a miracle. And then, maybe things will just be quiet for a little while. I never expect that any more, but it would be nice. I guess that is kind of a funny thing to compare my situation to, but it is the closest thing I could think of. And just like any expecting mom near her due date, I can’t wait to get this all over with! I’ve always heard moms say that they just can’t wait to see their baby and hold her and get to know her. I just can’t wait to breathe a deep breath with my new lungs, and get to know what this thing called “running” is, and to find out what it is like to feel like a 23-year-old. Yes, it sounds worth it to me! And I’m sure a lot of expecting moms can relate to this too, each day can feel so long. And each day that it doesn’t happen can be disappointing. I know Jonny and I have been dealing with that a lot in these last few weeks. But this morning, God (as He always does) gave me a reminder of Himself. 2 Peter 3:8-9 “But do not overlook this one fact, beloved, that with the Lord one day is as a thousand years, and a thousand years as one day. The Lord is not slow to fulfill his promise as some count slowness, but is patient toward you…” How great is it that God is not bound by time. We always pray for my new lungs to come soon, but to God soon is not the same as our soon. I’m believing that His soon will be the perfect soon. Way better than mine. When I think God is being slow, He is not. And on top of that, He is patient with us. Even though I’m constantly whining about how I feel or that I’m sick of waiting, I can imagine Him just smiling at me and patting me on the head and saying, “You’re ok, Rachel. I’ve got it all planned.”

Another thing Jonny and I try not to struggle with (but I know I do anyway) is the idea of being a “normal” couple. I was watching HGTV (which is the best TV station in the world and every show [except Holmes on Homes] is incredible!) and it was a show about a couple who had been married for 7 months and were trying to find their first home. I stared in disbelief as they said their first 7 months had been crazy…getting married, moving in together, getting new jobs, and now buying a house. They said they just wanted to relax. I tried not to laugh at them and throw a fit at the same time. But God reminded me, again, of Himself. There is a song that we sing in church that I just love. The chorus goes “I would run for a thousand years if I knew every step would be getting me closer. I’d swim to the ocean floor for my Lord is the treasure, my Lord is the treasure.” And it’s the truth. God has made me so happy. I couldn’t ask for a better, happier life with my husband, my parents, my sister and her husband, my in-laws, my friends…this is awesome! And in the end only God is what matters. God is the treasure. Not a new house, a “normal” life, not even new lungs. It’s not about me.

To update you on my health, I’ve been holding my own. Did another 2 weeks of IV’s and that didn’t really do anything. Mom is taking me on Wednesday to Baltimore. All of my CAT scans and a heart test are out of date so I have to have to do them all again. Then we have an appointment with my transplant doctor.

Thank you for praying for us. We still need it : )

- Rachel

P.s. Here are some random pictures from the past few weeks...

 

 

 

Jonny and his Valentine's day present

Me snuggling with Blizzie

Jonny's wedding shoes and my Valentine's day present

My first sewing project...placemats!

Valentine's Day

“If you love until it hurts, there can be no more hurt, only more love.” - Mother Teresa

God first put Rachel in my life 6 years ago. I didn't know Rachel had CF until the second time we saw each other. I was completely taken with her from the moment I saw her, and her condition (which I knew nothing about) didn't change anything. Rachel and her father accompanied the band I was in to a show we played in NYC, a few weeks after I met her. Rachel was on IV's at the time, and while she was in the club restroom starting her bubble her father, Sam, turned to me and said "Let me tell you, her disease doesn't stop her from doing anything she wants to do. She's an accomplished ballerina, she's going to Shepherd University in the fall, and she doesn't let being sick hold her back." Although I hardly knew her, I agreed with him and said that I wouldn't have even known she was sick from the things they were telling me about her. Her strength was so attractive to me, among the millions of other amazing things about her. I wanted to be with her so badly even then.

Rachel and I started hanging out as friends after that show. I learned more about CF by talking to her, but she didn't seem to want to talk about it too much. One night I got on the computer and looked up as much as I could about CF. After reading more about the symptoms, medications, therapies, treatments, and average lifespan of people with CF, I broke down. I cried until I was exhausted and fell asleep. I can still remember exactly how I felt every time I hear Muse's "Ruled by Secrecy" and "Blackout" since I was listening to those two songs that night. The next day I hardly talked. I was torn to pieces inside about a girl I hardly knew, but loved deeply.

Over the next year she started college and we hung out less and less. Once I started at Shepherd, we started to meet up once a week or so to hang out in between classes. Every time I saw her, all of the feelings I had for her when we first met came flooding back. The spring semester of my freshman (her sophmore) year she told me that she was being evaluated for a double lung transplant. She was going through some other tough things at the time, and I was so glad to be the person she vented to. I wanted so badly to be with her because I wanted to make her feel even the slightest bit better amidst the storm of a life she was currently having. I wanted to make her feel as beautiful as I knew she was. To make her feel as loved as she was.

That summer her health took a great turn for the better and she no longer needed the transplant then. I personally grew up a lot that summer and when we started Shepherd together again in the fall, our relationship began to change. We constantly  flirted with each other, sat together for hours in between classes, had stories and jokes only funny to us, and watched movies on the weekends. A month into the semester I asked her to be my girlfriend after a date to Winchester, WV (classy...). She was my first "real" girlfriend, and to be completely open...my first "real" kiss. Now I had been in love with her for 3 years, but I finally told her one month into our dating. A month or so after that I told her I wanted to grow old with her and have children (I don't waste time, haha). Before long we talked about getting married. I proposed to Rachel shortly after our 2nd year anniversary. We set the wedding date for September of the following year, but early in 2010, her health began to decline and she was hospitalized for almost a week.

One day while we were eating together in the hospital cafeteria, we decided that we didn't want to wait any longer to get married. The doctors had brought up the idea of a transplant again and we thought that if she needed it later in the fall, the stress of a transplant and a wedding would just be too much. We told her parents about our decision and we immediately began changing our wedding plans. She got better and continued to do better all spring and through the beginning of summer.

We were married July 10th of 2010. We had just over 1 month of newlywed bliss before things got worse with Rachel's health again. Two days after her 23rd birthday she was hospitalized with a bad lung infection. A team of doctors came into the room and spoke with the two of us, telling us that it was time to move towards a double lung transplant. Cue the Muse songs. We cried together for a while, knowing what was ahead of us. We had been married for 6 weeks and were about to embark on a journey that no one should have to go through, much less in the first months of their marriage.

So here we are, 6 years friends, 3 years together, 7 months married, 6 months dealing with the transplant, 3 months on the list. And you know what? I wouldn't trade places with anyone in the world. Not before, not now, not ever. Rachel is God's perfect gift to me and not a day goes by that I don't thank Him for her. She's my best friend and I love every second with her. She has made me a stronger man and happier than I could ever be with anyone else in any other situation. The Mother Teresa quote really hit me the other day when I read it, because many times when Rachel is feeling terrible, the only thing I can do to help is to love her; to love her until it hurts...until she no longer feels hurt, but loved.

I hope you all have someone incredible to love like I do, and are loved by someone as much as she loves me. If so..don't just say it, show it. Happy Valentine’s Day. – Jonny