Yesterday (Thursday) morning I worked out before walking to the hospital. Rachel and her mom had not rested well through the night, as Rachel's IV's kept beeping and nurses kept coming in. Karen and I have been switching off which one of us is sleeping at the hospital. It's nice to go back to the hotel and not sleep in a bed, plus her mom is great with washing and doing Rachel's hair, and getting her cleaned up in the morning. Things that I wouldn't say no to doing...but there's just some things moms are better at (just ask Rachel about my hair stylist skills...or lack there of).
Soon after I got there, a couple of nurses came in to try to put in another IV line to give Rachel a unit of blood. From all the blood draws and chest tube suctions they've done they've practically made her anemic. I held her had as three different nurses tried to find a vein, poking her 3 times before giving up for a while for Rachel to have a break from being a human pin cushion. That was ridiculously frustrating for Rachel and all of us. She's been through so much and it kills me to watch her be put through more. Some good did come out of the nurses visit though, as they pulled her last remaining chest tube out.
Later, we asked the nurse if there was any way we could do her second swallow test that day instead of Friday, since we already have a bronchoscopy scheduled and the two test don't really jive with each other. She made a few calls and actually got the swallow test scheduled for 1pm! I know I've mentioned it before, but it's worth repeating that Rachel's thirst was probably worse than any of the other post op issues she was having. Even though she was fairly hydrated from her IV's, her mouth, throat, and lips were so dry it was painful. It was awful to see since there was nothing I could do to help her apart from getting her the antiseptic sponge that she was allowed to use to wet her mouth and lips. After the first swallow test though she was allowed to eat small ice chips one at a time, but that was still no replacement for drinking.
I walked down to the test with Rachel and again watched as the doctors gave her applesauce of various consistencies, crackers, and different liquids. This time though, on every swallow, nothing collected at the top of her airway. Each gulp was more clean than the one before. When she finished she was in tears...and so was the doctor administering the test. Rachel has had such an incredibly positive attitude throughout this whole ordeal, but the discomfort and pain of not eating or drinking for 5 days was getting to her. I said goodbye to Rachel as the nurses got ready to take her back to her room and got what I knew she deserved to have waiting for her: a 32oz Mountain Dew from the soda fountain. She downed it in a few minutes along with a peppermint patty and chocolate covered caramel (her nurses weren't thrilled with her blood sugar after that).
Before long Rachel's nurse came back with the unit of blood they tried to give her earlier, but figured out a perfect time window between several of her medications that she could administer the transfusion in an empty IV line. After getting most of the unit, Rachel was feeling much better and decided to go for a walk with me around the floor. The walk turned into a half marathon-like stroll 6 times around her floor! This was double what she had done on Wednesday, and 2 more laps than she did on Tuesday. I can't wait to run and workout with this girl...she's gonna be a beast (in the most beautiful sense of the word, of course).
At dinner she got to have mac and cheese and a grilled chicken breast and chocolate ice cream a little later. I'm a huge believer of Hippocrates' saying "Let your food be your medicine, and your medicine be your food." I'm sure he wasn't thinking about Haagen Daz ice cream, but it's definitely working for Rach. Also in the evening, Sam's brother Bob came to visit after flying from where he was in southern California. After a nice family visit, everyone headed back to the hotel while Rachel and I watched "American Idol." I helped her get ready for bed, then laid/sat in the reclining chair and tried to sleep. It wasn't a great night for either of us, but Rachel finally fell into a deep sleep early this morning.
Friday, March 4, 2011
Thursday, March 3, 2011
Post Op: Days 3 and 4
Ok, so the days have been blending together and I can't exactly remember what happened which day, but here's a recap of the past 2 days.
Tuesday morning I walked with Sam to the hospital after breakfast and a quick workout (they might be short, but I haven't missed a day, in case any of my clients are wondering). Around lunchtime a Brian, a transplant coordinator, came to speak with Rachel and I about adjusting to life at home. There are a lot of things were are going to have to be careful about since Rach will basically be operation without an immune system from the anti-rejection medications, but he kept stressing how much better her life was going to be now. He was very encouraging and did a great job of teaching us how to keep Rachel healthy, but not go crazy trying to do so.
A few hours later my parents and younger sister Bethany came down to visit. They brought me some things we needed from home, along with some gifts for Rach. After talking to us for a while, I took them for a mini tour of the historic part of Hopkins (this place is starting to feel like second home already). After visiting with Rachel some more, I took my family downstairs to the cafe area for dinner. The visit was great for the both of us. Having the support from my family is amazing. They never once tried to discourage me from being in a relationship that they knew was going to have its difficulties. They also think the same thing about Rachel that I do: her disease does not define her.
Rachel did great with her walking, doing 4 total laps around the floor she's admitted on. All of her doctors continue to express their amazement at how quickly she's recovering. Also this morning another small chest tube was taken out. The tubes drain the excess fluid off from around her lungs. This is something that most people's bodies normally take care of, but Rachel's need to at a faster rate so that her lungs can attach themselves to the inside of her chest cavity.
Her family (Sam, Karen, Mary, and Peter) were around for most of the day, but headed back to the hotel around 7. Later watched "The Biggest Loser" together, a weekly tradition we have. After the show ended we tried to get to sleep, but Rachel's IV machines and her nurses had different ideas. We both hardly slept at all between the beeping and the nurses running around us. Around 2am I felt a hand on my shoulder and heard someone say "Wake up Jonny. Come on, man, you've gotta leave."Apparently I was sleeping well enough for it to take a good bit of shaking to get me up. It was the respiratory therapist who had come in to start an inhaled medication that only Rachel can be in the room for due to her strain of bacteria related to CF (there's still some in her upper respiratory tract). After waiting out in the hall for 20 minutes I came back in and tried to sleep a little more. Being awake to listen to the deep breaths of my wife sleeping made it worth it though.
Yesterday (Wednesday) morning I got up, visited with Rachel for a while, then caught a ride back to the hotel with Sam when he dropped Karen off at the hospital. Back at the hotel I worked out while Mary and Peter packed up to head back to where they live in Boston. Having my "sister and brother" there throughout all of this was incredible. They did so much to help all of us out. Even them just being around helped. We can't wait until we get to visit them later this year as I compete in the Spartan Race (a crazy 3+ mile obstacle course) near where they live and Rachel can visit her sister. Sam left to take them airport while I hung out in the hotel room until he got back. Once he got back we headed over to the hospital.
We found out when we got there that the chest tube that was taken out Tuesday might have to go back in. It was starting to come out, so they took it the rest of the way out, but apparently when it was coming out it was causing a mild pneumothorax (air inside your chest cavity that does not allow your lungs to expand completely) and was not allowing Rachel's lungs to adhere to her chest wall. There was talk about putting the chest tube back in, but apparently the problem was so mild that it will correct itself, as the tube was not put back in as of this morning (Thursday).
Around lunchtime Brian from the transplant team met with us again, this time with Karen joining us. We reviewed what we talked about Tuesday and he answered any other questions we had. He cleared up a lot about traveling, being around kids, cleaning our apartment, being in public, and exercise (all of which I can't wait to help with). It was another encouraging meeting for Rachel, Karen, and I since a few of the transplant people we've met with before made having new lungs seem just as bad as CF lungs (which couldn't be further from the truth).
In the afternoon Rachel did 3 full laps around the floor! She's felt pretty tired all day, and didn't walk any more after that, but she still did amazing. Later we sat on the hospital bed together and watched "American Idol." Rach fell asleep a few minutes into it, and I wished I could have too...it was pretty bad. After saying goodnight to her and Karen (who stayed the night with her) I caught a cab back to the hotel (I seriously typed "home" at first) and had the best night of sleep I've had since we've been down here.
I called Karen this morning to check on Rachel. They didn't get too much sleep last night, but Rachel's feeling good already this morning. Pray that she has the energy to walk more today, as she needs to be able to walk up stairs before we can leave. Also pray that her last chest tube will be able to come out, and that she'll ace tomorrow's retaking of the swallow test so she can have her precious Mountain Dew...
Tuesday morning I walked with Sam to the hospital after breakfast and a quick workout (they might be short, but I haven't missed a day, in case any of my clients are wondering). Around lunchtime a Brian, a transplant coordinator, came to speak with Rachel and I about adjusting to life at home. There are a lot of things were are going to have to be careful about since Rach will basically be operation without an immune system from the anti-rejection medications, but he kept stressing how much better her life was going to be now. He was very encouraging and did a great job of teaching us how to keep Rachel healthy, but not go crazy trying to do so.
A few hours later my parents and younger sister Bethany came down to visit. They brought me some things we needed from home, along with some gifts for Rach. After talking to us for a while, I took them for a mini tour of the historic part of Hopkins (this place is starting to feel like second home already). After visiting with Rachel some more, I took my family downstairs to the cafe area for dinner. The visit was great for the both of us. Having the support from my family is amazing. They never once tried to discourage me from being in a relationship that they knew was going to have its difficulties. They also think the same thing about Rachel that I do: her disease does not define her.
Rachel did great with her walking, doing 4 total laps around the floor she's admitted on. All of her doctors continue to express their amazement at how quickly she's recovering. Also this morning another small chest tube was taken out. The tubes drain the excess fluid off from around her lungs. This is something that most people's bodies normally take care of, but Rachel's need to at a faster rate so that her lungs can attach themselves to the inside of her chest cavity.
Her family (Sam, Karen, Mary, and Peter) were around for most of the day, but headed back to the hotel around 7. Later watched "The Biggest Loser" together, a weekly tradition we have. After the show ended we tried to get to sleep, but Rachel's IV machines and her nurses had different ideas. We both hardly slept at all between the beeping and the nurses running around us. Around 2am I felt a hand on my shoulder and heard someone say "Wake up Jonny. Come on, man, you've gotta leave."Apparently I was sleeping well enough for it to take a good bit of shaking to get me up. It was the respiratory therapist who had come in to start an inhaled medication that only Rachel can be in the room for due to her strain of bacteria related to CF (there's still some in her upper respiratory tract). After waiting out in the hall for 20 minutes I came back in and tried to sleep a little more. Being awake to listen to the deep breaths of my wife sleeping made it worth it though.
Yesterday (Wednesday) morning I got up, visited with Rachel for a while, then caught a ride back to the hotel with Sam when he dropped Karen off at the hospital. Back at the hotel I worked out while Mary and Peter packed up to head back to where they live in Boston. Having my "sister and brother" there throughout all of this was incredible. They did so much to help all of us out. Even them just being around helped. We can't wait until we get to visit them later this year as I compete in the Spartan Race (a crazy 3+ mile obstacle course) near where they live and Rachel can visit her sister. Sam left to take them airport while I hung out in the hotel room until he got back. Once he got back we headed over to the hospital.
We found out when we got there that the chest tube that was taken out Tuesday might have to go back in. It was starting to come out, so they took it the rest of the way out, but apparently when it was coming out it was causing a mild pneumothorax (air inside your chest cavity that does not allow your lungs to expand completely) and was not allowing Rachel's lungs to adhere to her chest wall. There was talk about putting the chest tube back in, but apparently the problem was so mild that it will correct itself, as the tube was not put back in as of this morning (Thursday).
Around lunchtime Brian from the transplant team met with us again, this time with Karen joining us. We reviewed what we talked about Tuesday and he answered any other questions we had. He cleared up a lot about traveling, being around kids, cleaning our apartment, being in public, and exercise (all of which I can't wait to help with). It was another encouraging meeting for Rachel, Karen, and I since a few of the transplant people we've met with before made having new lungs seem just as bad as CF lungs (which couldn't be further from the truth).
In the afternoon Rachel did 3 full laps around the floor! She's felt pretty tired all day, and didn't walk any more after that, but she still did amazing. Later we sat on the hospital bed together and watched "American Idol." Rach fell asleep a few minutes into it, and I wished I could have too...it was pretty bad. After saying goodnight to her and Karen (who stayed the night with her) I caught a cab back to the hotel (I seriously typed "home" at first) and had the best night of sleep I've had since we've been down here.
I called Karen this morning to check on Rachel. They didn't get too much sleep last night, but Rachel's feeling good already this morning. Pray that she has the energy to walk more today, as she needs to be able to walk up stairs before we can leave. Also pray that her last chest tube will be able to come out, and that she'll ace tomorrow's retaking of the swallow test so she can have her precious Mountain Dew...
Tuesday, March 1, 2011
Post Op: Days 1 and 2
(Sorry for any spelling/grammar errors, I'm not exactly at my linguistic peak right now)
After seeing Rachel and talking to her at 1:30am Sunday morning, her parents and I went back to sleeping on the padded benches in a lobby. First thing in the morning we went back up to see her and she looked even better than when we saw her earlier.
And just like she set a hospital record for shortest time on the ventilator, she set another one on Sunday: fastest time walking after the transplant. I helped her and her nurses as she walked down the hallway of the ICU and back to her room. It was amazing. Less than 24 hours prior those lungs were not even completely in her, and now she's using them to help her walk around.
The day had it's challenges though, as her thirst started to get more annoying. She had not had anything to eat or drink since 9pm Friday night. Her mouth was incredibly dry and the only relief was a small sponge on a stick soaked in antiseptic water. Because of the breathing tube being in and then taken out, her doctors were concerned that her throat might not be ready for swallowing things yet. We didn't want to risk the chance of her accidentally taking some liquid down her wind pipe, since her lungs don't have a cough reflex (since the nerves were cut to transplant them) to get the liquid out.
She was also exhausted all day from the meds and overall bodily stress she's under. She slept for the most part of the day, but it wasn't very restful, as nurses were in and out all day.
Later on in the day the nurses began talking about moving Rachel out of ICU and into a regular room. By 8pm, it was a reality. After spending 28 hours in ICU, and about 35 hours after her transplant, she was in a regular room. Now, it is a high level room and everyone (including me the entire time I'm with her) has to wear gloves, a gown, and face mask. But since she was in a regular room, this meant that I got to stay with her for the night. After talking and praying together for a while, I slept in a chair beside my wife. In the weeks before the transplant I would wake up and put my hand on her back to see if she was still breathing, that's how shallow and ineffective her breathing had gotten. Last night was different though, I could clearly see her chest rise and fall and I can't put into words how incredible of a comfort that is.
Neither of us slept well that night again, as her nurses were constantly in and out. At least she was well taken care for though. The next day (yesterday) she was pretty busy. I was with her as they pulled out two more chest tubes, leaving two left in to drain the excess fluid from around her lungs. She also had a PICC line put in her arm (a tube that travels from the artery in her arm to her heart) so they could take out the IV lines in her neck. This was a huge accomplishment for Rachel, since in the past she would have to be put to sleep in order for the line to be put in, due to the pain.
Around noon a physical therapist came in and did some exercises with Rach. We then helped her go for a walk again, this time doing a full lap around the floor she's staying on. The therapist kept saying how amazed she was, and how this was remarkable for being this soon after the operation. She was also glad to find out that I was a trainer, and that all the anatomical and exercise terms made sense to me. I had no idea why I wanted to change majors to exercise science after my first year of college, but I'm pretty sure I know why now. It's funny how God grooms you for things without you knowing it. I can't wait to help Rachel continue to exercise and improve when she comes home.
Later on in the day (just after the PICC line), I went with her and her nurses for the swallow test. Because she had a ventilator tube down her airway, her epiglottis (the flap that closes your windpipe when you swallow) might not function properly. If she were to accidentally inhale (or aspirate) some liquid, she could get a very serious infection that the doctors could do little about. I watched the X-ray video of the test from behind a wall as Rachel swallowed liquids of various consistencies. She did great with applesauce, but not as well with crackers and pure liquids. This is completely normal though. In fact she did better than most people for her first test. The doctors considered the results of the test and decided to let her start eating things like pudding, applesauce, and mashed up types of foods. She can also now have ice chips to crunch on, as long as she swallows them before they melt. She is so thankful for this limited food privileges though, since her throat and mouth her so dry it was getting unbearable.
She is still on a strong pain med via epidural that is keeping at bay the next challenge in her recovery: the pain from the actual surgery. When I last saw her last night she was doing ok, but feeling a little more pain than before. Her mother stayed with her and I went back to the hotel to sleep in a bed for the first time since Thursday night. It was also the first time I've slept in the same bed as her father...or any guy for that fact. But let me tell you, I was so exhausted I could have cared less...haha.
I talked to Rachel this morning and she said that they removed another chest tube last night, leaving one more still in her. She is feeling much more pain today, and said that she "probably wouldn't be as much fun as yesterday." I don't think I should hold that against her. She did just have a lung transplant, you know.
Keep praying that she continues to recover at this lightening rate and that her pain will be minimal. Also pray for her to be able to rest more, as that's an important part of her recovery as well.
After seeing Rachel and talking to her at 1:30am Sunday morning, her parents and I went back to sleeping on the padded benches in a lobby. First thing in the morning we went back up to see her and she looked even better than when we saw her earlier.
And just like she set a hospital record for shortest time on the ventilator, she set another one on Sunday: fastest time walking after the transplant. I helped her and her nurses as she walked down the hallway of the ICU and back to her room. It was amazing. Less than 24 hours prior those lungs were not even completely in her, and now she's using them to help her walk around.
The day had it's challenges though, as her thirst started to get more annoying. She had not had anything to eat or drink since 9pm Friday night. Her mouth was incredibly dry and the only relief was a small sponge on a stick soaked in antiseptic water. Because of the breathing tube being in and then taken out, her doctors were concerned that her throat might not be ready for swallowing things yet. We didn't want to risk the chance of her accidentally taking some liquid down her wind pipe, since her lungs don't have a cough reflex (since the nerves were cut to transplant them) to get the liquid out.
She was also exhausted all day from the meds and overall bodily stress she's under. She slept for the most part of the day, but it wasn't very restful, as nurses were in and out all day.
Later on in the day the nurses began talking about moving Rachel out of ICU and into a regular room. By 8pm, it was a reality. After spending 28 hours in ICU, and about 35 hours after her transplant, she was in a regular room. Now, it is a high level room and everyone (including me the entire time I'm with her) has to wear gloves, a gown, and face mask. But since she was in a regular room, this meant that I got to stay with her for the night. After talking and praying together for a while, I slept in a chair beside my wife. In the weeks before the transplant I would wake up and put my hand on her back to see if she was still breathing, that's how shallow and ineffective her breathing had gotten. Last night was different though, I could clearly see her chest rise and fall and I can't put into words how incredible of a comfort that is.
Neither of us slept well that night again, as her nurses were constantly in and out. At least she was well taken care for though. The next day (yesterday) she was pretty busy. I was with her as they pulled out two more chest tubes, leaving two left in to drain the excess fluid from around her lungs. She also had a PICC line put in her arm (a tube that travels from the artery in her arm to her heart) so they could take out the IV lines in her neck. This was a huge accomplishment for Rachel, since in the past she would have to be put to sleep in order for the line to be put in, due to the pain.
Around noon a physical therapist came in and did some exercises with Rach. We then helped her go for a walk again, this time doing a full lap around the floor she's staying on. The therapist kept saying how amazed she was, and how this was remarkable for being this soon after the operation. She was also glad to find out that I was a trainer, and that all the anatomical and exercise terms made sense to me. I had no idea why I wanted to change majors to exercise science after my first year of college, but I'm pretty sure I know why now. It's funny how God grooms you for things without you knowing it. I can't wait to help Rachel continue to exercise and improve when she comes home.
Later on in the day (just after the PICC line), I went with her and her nurses for the swallow test. Because she had a ventilator tube down her airway, her epiglottis (the flap that closes your windpipe when you swallow) might not function properly. If she were to accidentally inhale (or aspirate) some liquid, she could get a very serious infection that the doctors could do little about. I watched the X-ray video of the test from behind a wall as Rachel swallowed liquids of various consistencies. She did great with applesauce, but not as well with crackers and pure liquids. This is completely normal though. In fact she did better than most people for her first test. The doctors considered the results of the test and decided to let her start eating things like pudding, applesauce, and mashed up types of foods. She can also now have ice chips to crunch on, as long as she swallows them before they melt. She is so thankful for this limited food privileges though, since her throat and mouth her so dry it was getting unbearable.
She is still on a strong pain med via epidural that is keeping at bay the next challenge in her recovery: the pain from the actual surgery. When I last saw her last night she was doing ok, but feeling a little more pain than before. Her mother stayed with her and I went back to the hotel to sleep in a bed for the first time since Thursday night. It was also the first time I've slept in the same bed as her father...or any guy for that fact. But let me tell you, I was so exhausted I could have cared less...haha.
I talked to Rachel this morning and she said that they removed another chest tube last night, leaving one more still in her. She is feeling much more pain today, and said that she "probably wouldn't be as much fun as yesterday." I don't think I should hold that against her. She did just have a lung transplant, you know.
Keep praying that she continues to recover at this lightening rate and that her pain will be minimal. Also pray for her to be able to rest more, as that's an important part of her recovery as well.
Sunday, February 27, 2011
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
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
Friday, February 25, 2011
The Call!!!
We just got the call! We are excited and can't believe it. Please say some prayers for us!
Love,
Rachel
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...
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 |
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| Jonny's wedding shoes and my Valentine's day present |
 |
| My first sewing project...placemats! |
Monday, February 14, 2011
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
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