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 :)