*Pictures* Some May Be GRAPHIC

I got the okay from Lindsay to post some pictures! I don't have to many but at least you get to see some. Brie has more on her camera, so eventually we will get them up here as soon as we can. 

Lindsay gets her chest tubes out tomorrow and she will be getting a PICC line which is basically a home IV. She will have the PICC for about 2 weeks. Monday we will be the day we most likely move across the street. She went on another walk today and it was a bit longer than the day before.

***OK here are photos of her old lungs. Please turn away if you need*** 

*Pink Respirator* *Cute DO*

                                        *Her Incision Scar*

Moving Forward

Lindsay had a very productive day today. Her pain has subsided immensely and she still is very exhausted. She mentioned she went a on walk that was about 30 feet long. She had to wear her respirator which is pink, but I think she rather have a purple one instead. For lunch Lindsay had...solids! She savored her beef stroganoff and the look on her face when she ate that Oreo brownie was priceless for Jared & Nicole. We were talking about her feelings about the transplant and she is happy she did it. No regrets. Of course she knows it will not be smooth sailing ride because of all of the changes that will be coming her way, but she can't wait. Things she will have to get used to and learn are breathing properly, restrictions for the first few months and new medications. She has been breathing with the top of her lungs and in her shoulder area, but her Physical Therapist wants her to learn to breathe with the lower part of her lungs to get good deep breaths and get the full affect of her "Big Boy Lungs." I just learned that inside joke toady. It is said the donor is a male and while her and her friends were waiting for operation time, Lub said "Now you'll be getting your Big Big Lungs." We have no other information about the donor and we will not know until Lindsay is ready to contact the family. BUT it is up to them to respond.
Another thing she will have to get used to is all of the medication she will have to take. Prior to the lung transplant she had a pretty heavy regime to begin with. Mostly all of the meds she was on before will be non-existent. No more inhalers, breathing machines, oxygen concentrators and no more vest (percussion therapy). Anything related to the lungs will be replaced with meds, but she will have the same meds for the digestive part of the disease. She will be on anti-rejection, anti-infection and supplements. Oh yes I can't forget those enzymes. In essence, Dr's have been telling her she is trading one disease for another one. She still has Cystic Fibrosis because it is in her digestive system as well. I wonder if she can be cured if she got a pancreas transplant!?!? Huh, I should become a Dr. and experiment.
Tomorrow will be a new day as we both get pointers to get us ready for discharge. We are hoping Monday. Lindsay will need to memorize her medication schedule and brush up on her do's and dont's & I will get a tour of the hospital so we know where to bring her for clinic and appointments. I will let you all know how that goes.
Good Night!

Lindsay's Notes to the People

Lindsay wanted me to share with her followers and readers some updates:
*She wants to be off her clear liquid diet cause she needs real food, but unfortunately Doctor's order. They are taking precautions because there is a chance she can aspirate food into her new lungs and that could be fatal. Her meals consist of broth, jello, cranberry & apple juice, and Italian ice. Craig already tried bring Jamba Juice, but it was a no-go.
* As soon as the Dr. brings Lindsay a new/special mask she will be able to exercise by walking the halls. (I assume it is some type of respirator.) She feels weak because she has done no walking.
*Prior to her transplant her lung function was at 27%. You and I would be around 98-100% possibly higher. She won't be able to do the breathing test that measures until a few months but she will be glad to have 50%. I think she will do higher, but she would love to see that # because she has been between 19 and 29% for so long. I don't remember the last time she was above 30. She was off her oxygen today, but later in the afternoon her O2 saturation was fluctuation between 89 and 94. so the nurse decided to put her on 1 liter of O2. Lindsay was bummed because she was trying to go all day without it but the nurse said 1 liter won't set her back to much. You know Lindsay, always trying to be strong and independent.
*The nurse gave her a list of oral medications she will have to memorize and take. She has to memorize the name, dose (how much & when) and what the pill does for her. This list consist of 16 medications. Some are duplicates because of the dosage and some will be weened away in a short time. The Dr. will decide that. Lindsay will be on most of the medications the rest of her life to prevent rejection of the lungs. Most people think she would have rejected them already but there is always a chance of rejection later on.
*Lindsay was trying to remember what day it was and she mentioned she lost a day. I told her that was fine because she has gained more life with the new lungs.
*To break in these new lungs Lindsay needs to cough and blow in to a breathing apparatus. Her coughs were excellent and productive today but it hurts her to cough, so she hugs a pillow on her chest for relief. Her hiccups feel great. She tries to blow into the apparatus at least 10 times every hour to make her lungs stronger.
*On a scale of 1 to 10 her pain is a 4. It is mostly the incision and her throat. Her throat doesn't hurt as much because the tubing was removed, but she said her throat was traumatized by the tubing.

She got her hair washed in a shower cap today by Janis, Jenna, Amie and myself. When she is in the hospital she loves to have her hair braided so it is out of her way and Janis came on her lunch to do it for her. After everyone left we both took long naps. It was well needed. Lindsay is now able to get out of bed (with help) and walk around her room and to the bathroom. She decided to try to eat some warm broth today because she wasn't feeling as hot as yesterday and she said it felt nice to eat something warm. She started to move her head as if she was dancing and snapping her fingers. It was hilarious. I wasn't to sure if that was her or the meds. Speaking of warm, Lindsay had a hypersensitivity reaction to one of the meds. Her arms and face were quite red and flushed and we were told she has 'Red Man Syndrome' as a side effect. It is normal and should go away after the first few doses. She will not be on this medication after she leaves the hospital, so we are good.
Susan thanks for the $6. They wouldn't let me leave.
Keep checking back for more posts and hopefully I can get some pictures up for you. It is a little hard because I don't have a camera so I have been using Dads and I don't have his camera program on my computer.

Out Of ICU!

We were expecting Lindsay to be moved out of ICU today and she was moved around 5:45 p.m. Possibly in the next week (7-8 days) we will be moving to the apartments across the street for a month or so. She is now in her own room so hopefully she can get some sleep. Lindsay didn't get much sleep last night because unfortunately her roommate was keeping her up.

As Amie, Brie and I walk into her room this morning we noticed her hair. It was the cutest 'do' ever. Brie had asked her who did it for her and she said "my bed." It was just up in a pony tail but was sticking straight up. By the way she wants me to tell all of you guys she is "looking good." I got to watch her get out of her chair and walk to her bed. Of course she had help but she was doing most of it on her own. The nurse told her she was dancing because she had to waddle to get to the bed. 2 of her 4 chest tubes were taken out today and she is also hooked up to less IVs. Tears always come to my eyes because she surprises me every day on her great progress.
This photo was taken on day 2. She looks like the same Lindsay (well except for the hospital gear) but she is heavily medicated so she has her moments of looking her best! Her pupils are extremely small. I will post a photo of her cute hair do as soon as I can. I know you can't see much but you can see the smile on her face and how fast she is recovering only after 2 days.

She Needs Rest

Today when I went to see Lindsay she was sitting up in a chair. They have her out of bed in a chair, how amazing is that?! Today she was feeling more pain in her chest, but had plenty of rest. Lindsay was also given apple sauce to take some pills as well as water, jello and ice chips. She was woken up every hour last night so the nurse can issue meds and Lindsay was also requesting meds because she woke up screaming twice in pain. Our 4 o'clock visiting hour was cancelled today, so she can get some sleep. It was a good thing it was cancelled because she got about 3 hours of sleep. She really needed it.
She has a large following in the ICU, so I am sure we really wipe her out too. Her throat still hurts and she doesn't seem to have energy just yet so some times her and I just stare at each other instead of talking so she can be comfortable and not be overwhelmed. Her favorite thing to do is hold our hands. I love the way she reaches out to us to hold her hand. We are all very excited to be there for her and we try to rotate so every one gets a chance to see her, but I can tell she gets tired. By the time her 10 o'clock visiting hour hit she was passed out so we decided to leave and let her rest and recover.
Missy (Lindsay's roommate) and her mother& sister came to visit and brought Lindsay a stuffed, red heart with arms. It is so cute and I am sure she enjoys it. We are being told she is not allowed to accept flowers at this time. So thank you for your kind gestures, but we cannot accept flowers. If you like you can take the money you were going to buy flowers with and possibly donate to Lindsay's fundraising website. Unfortunately, it is not up yet, but I am meeting with the coordinator this Saturday to get more info about the website.
I'll keep you posted.

*RECOVERY*

What can I say...Lindsay's recovery is going as smooth as it gets. We were able to see her in the ICU about 11:30 a.m. this morning. We held her hands, talked to her and waited patiently for responses. Immediately she was squeezing our hands, nodding and shaking her head yes and no. She had even lifted her eyebrows and the best part is she opened her eyes a few times. That was just our first visit with her. We are only able to see her for a half hour every other hour. Each visit throughout the day was getting better and better as her responses enhanced. Her ventilator was taken out this afternoon and she is breathing all on her own! The nurse wants Lindsay to cough and take deep breaths to get CO2 out of her lungs. If she does not do this they may have to intubate her again. We do not want that so please pray for her. She had also received a blood transfusion today as well. I can't stress enough how well Lindsay is recovering. She has more color to her skin, and her fingers and toes are not blue because she is getting oxygen to them now!
We have been asking Lindsay if she can feel a difference with her new lungs but she tells us she feels some pain, but that she can actually breathe! Praise God! She still has a tube that is in her nose, to the back of her throat, then to her stomach. Towards the end of the night she was able to speak to us, but her reaction time to our questions is a little slow because the tube in her throat is not very comfortable. It is said she will be in ICU until Monday and possibly move out of ICU onto a floor unit for about a week. Of course this depends on her recovery and if she is doing well they will move her to the apartments across the street from Stanford. I will keep you guys updated only if you keep Lindsay in your prayers. Just kidding I will keep you posted.
I will not be posting any pictures on the web of her ICU recovery until she is coherent enough to say so because some of the pictures are pretty graphic and I am not sure if she wants them up yet. Of course this is Lindsay, and she will be happy to show them with you, but I am not comfortable without her knowledge first. Sorry.

The new lungs finally came!

Ok. So this is Brie....Lindsay's super awesome friend :). I wanted to update all of you about Lindsay and her NEW LUNGS from my point of view! Yesterday I was at work and I got a call from Lindsay at 11:49 a.m. and the first thing she said to me was "Brie Allen" and I knew right then that she got the call. She asked me to come get her from work so around 3:15 I picked her up and we drove to Stanford. When we got here they were expecting us and they told her to shower up and scrub real good :) They told us that she would be taken to surgery at around 10 p.m. Friday night (5/1). It was just her and I for a while and so we got to hang out and just spend some quality time together which was so nice! Her spirits were high and we both had a good feeling about these lungs! So while we were waiting so many people came in. First it was nurses, then it was a social worker, then a woman who was doing research, and then 2 very nice doctors came in and talked to us! They told us that the donor was a high risk patient which means that he was under a certain age (I believe 25) and that he was at higher risk for diseases then someone who was older (hence 'high risk') and that they ran a bunch of blood tests and other testing on him that all came back negative! Everyone was very optimistic! At around 7 or so all the other friends and family started trickling in until it got to the point where there were 18 of us!!!!!!!! We were all hanging out having a good time, keeping Lindsay's spirits high and then they came in at 10 and told us it wasn't going to happen until about 12:30. Lindsay was bummed especially because she was STARVING. So after more waiting they came back in at about 12:30 and said it would be another half hour to an hour because there was a trauma.....so more waiting! Then, finally they came (at 2 a.m.!) and wheeled her away! We were all so excited and so our entourage followed her! Through the halls we traveled, up one floor, and through some doors and then came time to say "we'll see you soon and we love you". This was the hardest part :(. We all waited in the waiting room and at approximately 3:15 a.m. Jonathon (the nurse) came in and told us it was a go! We were excited...and exhausted! We all slept for a while and waited....and waited....and waited...and waited some more. We got updates every so often and finally at around 10:30 the doctor came and told us that everything went GREAT! He said her old lungs looked like crap. They were filled with pus, super gross and they said that it was definitely time for new ones. I got to go in and see her and she looks AMAZING! I was so amazed at how responsive she was just 2 hours after surgery. She squeezed my hand, tried to smile, moved her head, opened her eyes.....anything you could think of she did! She truly is a loved girl.
Breathe Easy Lindz :) I love you!