Saturday

Well, we're here in the hotel and Friday was just the day we needed to catch up on much needed sleep and rest. Jennifer sat on the computer, catching up on other cf friends, watching tv, eating, and doing all her new drugs. She truly has this down. She has her cell phone alarm set for the times she has to take her meds. I was a little worried about her blood pressure when we checked on Thursday night, but showed more normal yesterday. That is a side effect of one of the drugs she is on. Hopefully, things will even out and no more high blood pressures.
Cameron made it here last night first. He was so excited to see her and she was him. Ray and Kelly came in after. Ray went straight to Jennifer and by-passed me. Typical! lol Kelly came in and I was so excited to see her! I was tormenting her, smelling her hair, but was just to have her here and all of us in one place, even though it's just for the weekend. Ray finally came back to tell me hello. I know he's worried about his baby, and I certainly understand. It's hard for him to leave and not being able to see her every night.
Jennifer wanted Chinese for dinner last night and had shrimp mango and crab rangoons. She ate all but one of the crab rangoons and most of her dinner. It's so good to see her like to eat again, not just because she has to.
We have a home care nurse coming between 12 aand 1 today to just make sure she's doing ok.
After that 2 girlfiends have driven up here to visit, so I think Ray, Kelly and I will leave and go somewhere to give them time to visit. I need Kelly time too. hehehe
Jennifer has an appt with the pulmonologist on Wed. We have to be there at 7:30 for bloodwork, I think an xray and then the visit to Dr. Budev. On Thursday, is the bronch. where they will take a biopsy to make sure she isn't in rejection. Im sure that day will be a rough one. Even if she is in rejection, they can up the steriods or put her on a couple days of iv's and hopefully stop that, so that will be nice. I hope things are going well and we can go home. If not, then we will stay another week or so. Time will tell!
Love to all!
Becky and Jennifer

Thursday Evening

Jennifer was finally released from the hospital today! yeah!!!! The fluid is still in the bottom of the lungs, but the Dr's. feel that her body will absorb the fluid once it realizes it shouldn't be there. We are staying at a Residence Inn, south of Cleveland. We have a suite, but had to go up 2 flights of stairs, which was questionable, but Jennifer did ok, with a rest at the landing of the first flight.
I walked beside her, holding her waist and hips, but stopped when she wanted to. We finally made it into the room. It is so nice! Has a living area with tv, gas fireplace, kitchen with table and 4 chairs, frig., stove, dishwasher and microwave. The bedroom on the main floor is where Jennifer will stay. it has a bathroom off the bedroom., and then a bedroom upstairs in the loft with a bathroom there also. There's tv's in each bedroom and living room, with a pull out bed in the couch. The people here are so nice. The manager knows that Jennifer is a lung transplant patient from Cleveland Clinic. She said her twin sister had 3 pacemakers placed from there over the years and she said that is the reason that her sister is alive today. They have said they will clean the room however we want, either with bleach or natural products. It was fine the way it is. Just so nice to see that people really care and are willing to do whatever need be, for another person.
Teresa came up yesterday and stayed and lead us to the hotel this afternoon. She said I was a slow driver. I told her the bumps didn't do well with Jennifer so had to drive slower. We are usually racing on the expressway with each other, so I'm sure she was wondering what happened to me. lol Especially after being in the rear on the way up on Friday, the 13th, heading to get the transplant. She never caught up, but was close!
Jennifer seems ok being out of the hospital, but know she is somewhat afraid. We sat and sorted through her pills tonight before dinner, did her blood pressure, spirometer, but haven't weighed her. The blood pressure cuff runs on 4 AA batteries, but that wasn't told to us. Fortunately, I had the batteries for that, but the scale runs on a 9 volt, so I have to go out for that.
The home care nurse is scheduled to visit here on Saturday, unless they have a cancellation and then she will come on Friday.
This journey is so incredible! Jennifer's not ready to run any marathons yet, but is improving
each day. Her legs are weak, but that will improve with the walking and doing a little exercise. There's very few times I've been speechless in my life, but am in such awe over how well she has done and how intelligent and caring the people are at Cleveland Clinic. We couldn't have asked for better care!
Ray, Cameron, and some of Jennifer's girlfriends are coming up this weekend to visit with her. That will be nice for her. I hope that Kelly comes also. It would be so nice to be a family again, if only for the weekend. She is a typical teenager though and not sure what her social calendar has on it. She wants me to come home this weekend, but still new for all of us with Jennifer being out of the hospital and just don't feel overly comfortable leaving her yet. Things will be back to somewhat a normal life again soon.
We will update everyone after a night of good rest!
Love to all!
Becky and Jennifer

Wednesday Afternoon

Ok, so Im packed for the most part and Jennifer wanted to have her hair washed before we left. They don't have a shower chair or anything to sit on, so we used the room chair. I took the shower head and washed her hair and conditioned it. I looked down and my feet and the bottom part of my jeans are completely soaked. I wanted to moved to the other side, so I could finish rinsing, but slipped and she was splashed in the face. (It really was an accident lol)
Anyway, after doing that, the Dr. on the floor came in and said she had some bad news. She was looking at the floor afraid to tell me, but said we can't let you go today and I see you're already packed, but there is a little fluid on the bottom of the right lung, so they want her to stay overnight and be rechecked tomorrow with an x-ray again. If it's still there, they will probably drain the fluid and then maybe discharge her. I can take this news and was fine. Jennifer was fine also. She said at least they found it before we left, which is true.
They've always said we will have bumps in the road and we are prepared for them. If this is a bump, we can certainly accept this, after all, not so horrible. Now if it was going home to West Chester, we may feel different. lol
So, not the day we wanted, but we're ok for another night in the hospital. I feel good they are monitoring her this close and know she is relieved also.
We'll let you know when things change.
Love to all!
Becky and Jennifer

Tuesday morning

Well, we made it through the bronchoscopy with flying colors! They said it looks wonderful. Yeah!!!!!! She slept all day yesterday, but had been up most of the night worrying about the bronch, so i'm glad she slept. I thought about getting into the chocolates. She couldn't stop me, right? lol Just kdding.
The Dr. on the floor came in this morning and told her she was doing well, her blood count is back up, the potassium is in normal range (it was high) and the kidney function is going back down.
We haven't seen the pulmonologists today, but they are planning on releasing Jennifer probably tomorrow. she still has to have an angiogram, so they said they will try to schedule in the morning and then release her in the afternoon as long as everything goes well.
Then she will see Dr. Budev, the pulmonary transplant Dr., in a week, so next Wed. or Thurs., have a bronchoscopy where they will do a biopsy of the new lungs, and if that looks well, they will release her to go home to West Chester by that Friday. It could possibly be the next Friday, which is ok too. As long as she's ok, I don't want to rush things. We are both looking forward to being home with Ray, Kelly and Cameron though. Back to a normal family life, only much better!!!!!
They keep giving her percocet for pain management, but it knocks her out, they want her to walk....doesn't mix. We will walk this afternoon though, maybe after lunch. She ordered Rascals pizza last night. Had half an Italian hoagie, so still has the other half and a salad left to eat, but did well. They have lost her menu she made out for today's food, so she's not happy about that. After all, the prednisone is kicking in. My arm might start looking good to her. lol
Her weight is still climbing. Hoping it's actual good weight gain. They said it's not ALL fluid, so I know at least she weighs more than she did. She is close to high school weight and that was great.
The Infectious disease Dr. came in and is deciding what to do about her coming in on antibiotics pre-transplant. Whether she needs to continue or not, but said it really is more the donors lungs than hers at this point. We will get an answer on that sometime before leaving, Im assuming.
She is so happy to be able to breathe normally. Just to see the smile on her face, the color back in her cheeks and the pink in her nails! What more could a mother ask for?
We love reading everyone's comments. It sure makes us smile and know how much she is loved, so keep them coming.
We can't get on facebook at the hospital, because the have a block on that here, so don't think we're ignoring you. We will hopefully be able to get on when we get to our residence in Cleveland after hospital dismissal.
Love to all!
Becky

Full Weekend

So the results from the arm ultrasound are back... I have an old blood clot in my elbow, but since it's old and I've had major surgery, they aren't going to treat it. The only treatment they would give would have been blood thinners.... and that's just not going to work. They said not to worry because old clots are tough things which more or less just cling to the wall of the vein and don't do anything. That's the good part of ultrasound. The bad part... I had to go for an ultrasound of my legs looking for new and active clots. They took me down early Saturday morning. When I got to the table I started to cough a little.

I'm still learning the way these new lungs work. And there was a little mucous in the lungs... so I figure, no big deal, right? Nope... huge deal. These lungs don't like the share. I was able to move he secretion, but couldn't get it out. In fact, I did worse... I moved it higher in the airway so I couldn't breathe in. I was terrified. They almost had to call a code blue (pulmonary distress/emergency) but a doc was walking by. What a blessing because it was Saturday morning :) No one works at a hospital on the weekend! I was finally able to move things on my own and have been better moving the gunk, but man.... I knew this wasn't going to be easy, but I never thought I'd be that scared from coughing after surgery!! Great news though... no clots in my legs!

Lois and Don came and I got to spend some time with them, which was nice! They brought be a couple boxes of chocolate which I have yet to open because I don't want to have to share with my Mom... I don't know if many of you know this, but she has a major sweet tooth!!

Teresa, Ron and Trent also came and that was so much fun. I went for walks while they were both here and my second walk was that much better!!! I made it up to the 9th floor and was able to look around the Cleveland from the windows. It was wonderful! I also got some of the best news ever today....

I should be discharged from the hospital within the week. Thursday most likely.... could possibly be Wednesday. Then, I have a week or 2 here for all sorts of lab work and education followed by HOME! In about 3 weeks I should be back in Cincinnati! WOO HOO!! Let the partying begin :)

Friday Evening

Hi everyone. This has been a busy day, so we haven't had time to do any postings. They took Jennifer down for an ultrasound of her left arm. It's still very swollen, more than the right one, so they wanted to check for any additional blood clots. That was this morning, the pulmonologist team came in and said there were old clots there,(they are assuming it is from the many picc lines she has had, but no new ones, so that was a good thing. I had asked if there was an old one, could it break away and cause issues for her. They've reassured us that it won't. they were talking about doing heparin shots for 6 months just to keep things from being a problem, but after consulting the surgeon and going to pathology to discuss with the Dr. the old lungs, they are only doing the shots until she gets up and really starts moving. They found blood in the old lungs, but thought it was because she would cough up blood on occasion and it was probably left from the last time she was sick. They are doing an ultrasound on her leg in the morning, just to double check and make sure things are good.
She's doing very well today, getting up and going to the bathroom on her own, sitting in the recliner to eat her food. She said she's very thirsty but we're assuming it's because of being on lasix an draining all the fluid off her body. She's not eating a lot, but think it's more an issue of swallowing and it hurting in her chest, than it is the food itself. She is also very tired today, but every time she gets into bed to sleep, someone comes in. Just like a hospital, isn't it? lol
We're looking forward to our visitors this weekend. Ray is bringing my car back, Lois and Don are coming and then bringing Ray back home and Teresa, Ron and Trent are coming, provided there isn't a lot of snow.
Teresa and Joe sent me a cooler stocked with beer, water and diet mountain dew, and then a storage box of snacks, everything imaginable. I'll be as big as the house when I get home, but at least happy! lol
Hope everyone has a good weekend and we will post again as soon as we have new info.
Love to all!
Becky

It's me :)

Mom said I should write... so I'm going to try to give a little of my perspective here.

My hands are swollen like little microwaved marshmellows, I bruise so easy and can be knocked off balance by a sneeze from someone else. All of this should return back to normal soon. I'm hoping as I start walking the halls more that I'll slowly regain my strength.

My pain is like wearing a really bad bra that I can't take off. My skin feels very tight where the incision is on my sternum and also where the 2 top remaining chest tubes are. They bottom 2 tubes have been removed and I have two stitches instead.

We've had communication issues on the floor here, but the overall care is good. If people would just do as I asked, life would be good :) Hope all is well back home. I miss you all and we'll have to have a big 'ol party when I get back!! Love you!

Thursday Afternoon

We finally have met the surgeon that did Jennifer's lung transplant, Dr. Merthy and Dr. Yan, whom we have seen every day since the surgery. Dr. Merthy was standing here talking and we asked about possibly getting pictures of her lungs. He said maybe pathology would have some. He made a comment that her lungs looked like Friday the 13th, the movie. He said they were filled with infection and had to be very careful taking them out of her, so there wasn't anything spilled into her body. Then he said that there was a blood clot on top of the heart in one of the arteries that was getting ready to go into her old lungs. He said that when they took the suction out, it was there, with scar tissue over it, showing it was old and probably from her old port. It was at least the size of a quarter or larger. He said that would have caused a major problem. Yeah, I'm sure it would have and glad it didn't. Just such a scary thought. Apparently, the transplant was none too soon.
They have removed the 2 peripheral iv's from her hands and have accessed her port, they are planning on removing the catheter at midnight tonight and hopefully she can pee on her own when she gets up in the morning. They have changed the blake tube containers to little balls, similar to the home pumps she used to do her iv's in. She is overall feeling much better. The fluid is draining well from the right side of the blake tube, the fluid in her body seems like it is going down, other than the left hand and arm. They are going to do an ultrasound to see if there is any other clot that would be in the arm or on that side of her body. The Dr. had said they will do a bronch and angiogram before she leaves and is thinking sometime early next week. They are putting her on more solid food, but so far that hasn't been changed by the Dr. because she keeps getting liquids. I think that is from the resident. She didn't know how to order emla cream to access her port, so it took her 4 hours, until Ray and I went out there and stood at the desk, spelling the cream for her and finally it came up. I guess I will have to spell S O L I D also. hehehe She is eating a cinnamon and raisin bagel and drinking a sprite and that has been good.
That's all the news I have for now. I hope there isn't anything else relating to a blood clot the next time. she is supposed to walk but no one has come in to try to help her. I guess I'll find someone for that also. Ray and Cameron left today for home. They should be home by 6. I think he needs some normalcy and I know Kelly does.

New Picture

Here's a new picture for everyone. She's sitting up!

Wednesday Evening

Jennifer has had a pretty good day. Nothing like last night with the pain. She made a comment today about how swollen she is. She said she looked like a "pink peep". Quite the character.
She is actually as I sit typing, having a massage for her neck and back. The massage therapist is actually rubbing her feet, (which if anyone knows Jennifer at all) that's funny. She hates anyone touching her feet, but was willing to try it to stop the archness in her back and neck. She has eaten jello, drank broth, iced tea and lemon ice and cranberry juice. She said that they all tasted good, better than ice chips. I don't know, but she probably won't be quite as picky with her food anymore, since she hasn't eaten in almost a week. I think anything will taste good. she wanted fries and a coke from McDonalds yesterday, but thought maybe that wouldn't be a wise move. Good call, don't you think? We were sitting here right around 6 or so, and Jennifer noticed that her gown was becoming wet Jennifer thought that it was her chest tube that had come loose, I thought it may have been her catheter leaking. I called the nurse, but there were 3 emergencies on the floor, so we really weren't top priority. The nurse finally came in, looking a little frazzled They had to send a couple patients back to icu. she checked Jennifer, who was right about it being her chest tube. It had come apart at the connection that laid on her stomach and was leaking. So the nurse came in, put it back together, taped it and went back to the other crisis'. Overall, if that's all we have to deal with today, it was a pretty good day. Im thinking in the next day or so, you'll have Jennifer writing on her blog again. It will be nice to hear firsthand from her again. We have been so blessed with family and friends that have prayed and been concerned for Jennifer. I can never tell you what it has meant to us! Thank you from the bottom of all our hearts!
Ray, Becky, Jennifer, Kelly and Cameron

Wednesday-a calmer day

Today seems to be a better day than yesterday. Jennifer has a tray of jello, juice, hot tea and broth in front of her. She ate some of the jello and drank a little of the juice, but asked her dad to bring her a small iced tea from the cafeteria. she would rather have cold tea than hot, so didn't think that would be a big deal, if that's what she wants. She's back on the oxygen, but watching her breathe as she is sleeping, and doing much better, taking bigger, deeper breaths. That helps us as much as it helps her. They gave her morphine last night in addition to the pain pump, so hopefully that will be a big help. They think they can get her a recliner also, so know that will help when they get her up to sit up. They only have 5 recliners on the floor and I guess once you get one, you don't want to let it out of the room. There is a patient that is leaving at 1 today from the floor, so the PCA said she knew she could get one, just didn't know exactly when. That's good enough for me!
Please keep the prayers going and comments. Jennifer loves to hear from everyone. She hasn't felt well enough to talk to everyone on the phone, but sure that will change again in a couple of days.
Love to all!
Becky

The pain becomes reality

Tonight's not a great night for Jennifer as far as pain goes. The nurse had her up in a chair for about 30 minutes and I think that was a little too long. She is hitting her pain med. button on a regular basis. I just think it's all caught up to her. She's still doing great, just alert and realizing how bad this hurts. Hopefully, in a couple of days things will start to even out. She loves hearing what everyone has said on the comment section. It usually makes her smile. I wanted to get a picture of her sitting in the chair, but she looked at me with the "I don't think so" look, so Cameron wouldn't take it. Maybe in a day or so, we can post more pictures. Talk to everyone soon!
Becky

Well, we have finally moved to a regular room. She is having trouble today with pain. Her body is achy, neck is hurting, you can only imagine. I have read her all the comments from everyone and that put a smile on her face! Now, the healing begins. She still has 2 "blake" tubes, not sure if that's how you spell it, but smaller tubes than chest tubes, but similar. She wants to sit up in a chair and hoping that will help her body to stop hurting. Her arms, hands, and feet are swollen, so think they will give her lasix today and that may help the hurting feeling. We are in J-building, Wing 2 of the 8th floor, room 1. Now if you can figure that out, you're pretty smart! hehehe
She isn't allowed anything that would hold dust in the room. A friend of Jen and Cameron's, Evan, came last night with artificial flowers in a vase and they said she couldn't have them. He brought in the vase though. A whole new thought process! Her telephone # in he room is 216-636-4300. Someone will be with her, so it's ok to call and if she's awake and feeeling ok, I'm sure she'd love to hear from everyone! Thank you for all the continued prayers and concerns! You all will never know how much it means to our entire family!
Love to all!
Becky

Settling In

Jen was moved out of the ICU and is now happily sleeping in a normal (without tons of noises, nurses, and crazy medical stuff happening all around her) room. Everything seems more calm and relaxed, and she seems to be much more comfortable.

I'm probably thinking all of this because we have finally exited the mayhem of the ICU.

I have a feeling that Jen may be the one posting from here on out, so thank you again and forever for your support and prayers. Your comments and responses did wonders.

Standing Tall (sitting sleepy)

Jen is now out of bed and is sitting up in a chair. She's alert, but sleepy and nodding off frequently. She had two more chest tubes removed, and while I wasn't in the room for it, Jen said that it didn't hurt as bad as she thought it would. There are only two smaller drainage tubes remaining and from what I understand those will stay in for a while. The docs would like to move her from the ICU today to a regular room, so we're waiting for a room to open up and for her to become stable enough to move. Overall things are going great. we'll keep you posted. Thanks again for all your responses and prayers.

Transplant (With A Smile)

We are all thrilled that Jen is off the ventilator. She's awake and talking and says she feels good. We are catching her up on all the things that have happened while she was asleep. She as always more concerned with our comfort than hers. We just finished eating dinner and we're headed back to continue visiting with her. We just thought you'd like to see her.

The ventilator is out!!!!!

We let Jennifer rest because she was getting so anxious about the tube in her throat. She has a very sensitive gag reflex and it was really beginning to show! She fell asleep for an hour or so and then the nurse woke her up to start the whole process over again with removing the ventilator. Ray had gone back and was with her and I decided to walk back to check on her. She was awake and started gagging and thought she was throwing up. I went to get the nurse, the therapist came along with the Dr. that assisted in the surgery and they noticed that she had an air leak in the tube, plus the tube was larger than should have been, but used it for the bronch they performed. Anyway, they pulled it and put her on oxygen and she's smiling and trying to talk, but she can only whisper for now. She's actually very happy, like the rest of us. Another hurdle accomplished!!!!!

Jennifer and the vent

Hi everyone! It was a long day yesterday. We all took turns going back to see Jennifer, talking to her, holding her hand, rubbing her hair, you know all the things that probably irritate the hell out of her! lol She is doing wonderful! The color is coming back into her face, which helps me and everyone else that sees her. We hardly slept at all Friday night and Sat. morning. Then was ready to get a hotel room, take a shower and lay down for a little bit, when the Drs had come in and then decided to try taking her off the vent. That's certainly not the normal that soon, but the medical people all said she was doing so well, they were going to try. They backed the pain and sedative drugs down and she started becoming a little more alert. She was breathing fairly well, but the more she came off the drugs, the more "panicky" she became. She has this huge vent tube down her throat and has to control her breathing through this tube. We were coaching her, telling her to calm down, breathe slowly, etc. She was doing well but the panic set in and I think she had a full blown panic attack, so they started her sedative and pain med. back up, started back up on the vent with the air and it made her go back into a deeper sleep.
That was excruciating to watch as parents. Afterwards, we left, once we realized she was ok and sleeping and went to get a hotel, take a shower, get some food and then check back with her again before we finally said goodnight. Cameron slept in the icu waiting room, wanting to be neaar her. Ray of course, had to come back and check one more time before he could relax and sleep.
Today, we were in there visiting and once again, they are backing down the meds and trying to get her off the vent. They want to take this slow, reminding us we're not in a hurry, which I so know, and then said they were taking 2 chest tubes out and the iv in her neck. That was great news! They decided if we would agree, for us not to be in there when they are trying to get her off the vent. They said it's hard on the family to watch, which is SO true!
So, were in the waiting room, waiting......
Becky

We went to see Jennifer in recovery. She looked pale still, the nurse said that was very normal. She was breathing normal, instead of the short belly breathing. That was so cool to see. They have her on a paralytic so she can't move and pull the ventilator out, but she was moving her legs and arms and nodded when I spoke to her. She didn't open her eyes though. As soon as I told her she was ok and doing great, she would quit moving. The nurse said that they would have her use a c-pap and if she did ok with that, they would take her off the ventilator, starting sometime after 6pm or so. That was her worst feer, waking up on the ventilator. Hopefully things will move along at a good speed and she can start to recover. I will let you know when we have some new information.

Becky

In recovery

The receptionist called from the icu and said that Jennifer is back, they are cleaning her up and we could call in 30 minutes to come back and see her. She said she looked great! I love those encouraging words!

When the Dr. called and spoke to Ray he said there are 3 things to be concerned about. The bleeding, oozing, fear of rejection and her body has been through alot, so how strong she is to fight and heal. She is a fighter, so hopefully things will go smoothly for her. She sure has a cheering section all over the United States!!!!

We will continue to update once we have a chance to see her. Thanks for the continued prayers! That has gotten us this far and she still has a long road ahead.

Becky (Jennifer's mom)

Still in the OR

It's about 2:30am. Jen is still in the OR, but we heard from the DR about 30 mins ago, and he said he was finishing up the transplant. I'm sure he'll want to talk with us after it's finished to give us the run down on how everything went. I'll keep everyone posted.

Jen is in the OR, the wait is over, the wait begins

This is Cameron, Jen's boyfriend. The waiting is over. She got the call for lungs around 11:30am. I drove back from work and Ray (Dad) did as well. We met Caroline (neighbor) and Teresa (aunt) and her Mom at the house and left. Our friend, Michelle, met us on the way up, and her sister, Kelly, is also came. They allowed us to drive instead of flying which gave everyone a little more time to breathe. She sent out a text message to some of her friends, and apparently one of the numbers was wrong. A guy messaged her back asking who she was. After she figured out she had the wrong number, he said she sounded cute and asked her how old she was. She replied that she was married. We laughed about that all day. After a long (mileage) and quick (speed) trip to Cleveland, Jen was admitted to the OR at 7:30pm. We found out the lungs were in good shape about an hour ago, and we were with her waiting until she left for the surgery. She was in EXCELLENT spirits, cracking jokes with whole time. Minutes before she left she had a typical bout of coughing, looked at her Dad and said, "It's ok, I'm going to go cough up a lung now." She will be in surgery for the next 8-12 hours. If I get any updates throughout the surgery, I'll post them here.

IVs yet again

Just a quick little blip about what's going on at home right now.

Most of our nerves have settled since "the call," but we still jump a bit when the phone rings.

I've gone back on IV antibiotics. My cough was incredibly croupy and I overall just wasn't feeling well. I also have been using my O2 more, but that was something Dr. Budev had told me to do anyway. Being on IVs will not change my chances of receiving my transplant. If the lungs are available, I still get them. What it does change is my post-op care. They want to make sure that I'm on the drugs afterward to make sure I'm clear of infection. While I'll have new lungs, I still keep some of my old airways. Sinuses, throat, and a small portion of the bronchi. They all still have CF and the mucous that comes with it... don't want those things ruining those beautiful lungs I'm about to receive :D

I'm as ready as I'm going to be for all of this... so if it's going to happen, it needs to happen soon!


Oh, and update on Garren - He's doing great, is now able to eat and is down to 2 chest tubes. He has a slight upper respiratory infection so they're waiting on that to clear. He should be able to go home on Friday or Monday though. I can't wait for this little man to start living life!

And That's What We Call A "Dry Run"

Ok, so not really a TRUE dry-run, but close.

It's 3am Saturday, February 7th. Just a couple of hours ago I got the call that I've wished for/dreaded. Mike from Cleveland called... sheesh! I picked up the phone, saw the caller ID and immediately sat down. I was all ready to yell at whoever was calling. In hindsight, I'm glad I didn't pick up the phone yelling :) I'm guessing so was he, haha!

He said he had lungs and was 97% sure that they were going to be mine. He'd run a bunch of tests and it was a great match. There were a few tests left and he'd do those while I got my things together. Time wasn't an issue for this pair and he told us he was going to have us drive up. It made things a little more easy going. I said a little... it was still chaotic! I went to wake Mom up and then decided I desperately needed a shower. Poor Kelly stood in her room and stared at her bed saying "I just don't know what to do!" - She's had a tough few days, but she did get her driver's license today (AAAAAAHHHHHHHHHH!!!!!! So SCARY!!!) And then I called Cameron to tell him to come back over so we could all drive together.

I got in the shower and washed my hair and shaved my legs - 2 things that should have been done a while ago - and a million things passed through my head. It's amazing what you think of in times like this. "I still need to return that DVD from Christmas" "I haven't finished my cross-stitch yet!" "It's too early, I still need more time to prepare" "I wonder if Dr. Budev got all of my paperwork from the fax" "But I have a dentist appointment Monday" "Guess I won't have to call Dr. Trapnell about IVs on Monday".... and the list goes on. I sat in the bathtub and said a quick prayer and placed everything in God's hands. As I tried to figure out what clothes I was going to wear, Cleveland called back. The lungs weren't good enough. Apparently Cleveland is INCREDIBLY picky about accepting lungs, and I couldn't be happier for it. They called me back before I had too much time invested in the anxiety. We had made a few phone calls. A couple aunts and my neighbor. So Mom sat and called them all back, letting them know it just isn't time yet.

Caroline came over and sat with us for a while. It was a while before any of our heart rates had returned to some "non-stroke" range of normal. Finally my eyes are getting heavy again, my body tired, and it is time for me to lay here and attempt to get sleep.

Garren

Garren is a young boy with CF. 7 years old to be specific. For being so young, this kid has been through more than I have. For a while now he's been having some serious trouble and last July he was listed for a double lung transplant.

For children, the allocation system is different. It's the old system. The crappy system. I think I heard it best when someone referred to it as the delicatessen system. Take your number and wait. Complete garbage if you ask me. Don't we all deserve to get lungs when we need them the most?! Luckily, this boy did.

As of 2:30AM February 2nd, he has new lungs. And as of tonight, he's already gone on 3 small walks on the unit. Granted, one of those walks was only 50 feet, but seriously, the lungs have been in there for less than 24 hours!

I'm writing this to ask whoever is reading this to please say a prayer for him and his family tonight. That his recovery continue to be as speedy and smooth. Also, to pray for his donor's family. For as great as it is that Garren has received his second chance... we all know what has to happen. God Bless you G-Man, you are quite the amazing kiddo!