Good Evening All - Just a quick post to let you know that things are going well today. We made it back to crazy no-gas Cornelius. Seriously it is a little funny...I know not funny if you are almost on empty, but crazy. Anyway...I do have to say that when I was getting gas tonight I had the slowest pump on the planet, but I starting talking to the man across from me trying to feel up a moving truck (Uhaul type). I was wishing him luck and he was wondering if everyone was nuts in North Carolina? I tried to tell him everything you all have been telling me. Anyway he proceeded to tell me that they were going to Ohio and that he felt so sorry for his daughter. They were moving there to help her husband he was diagnosed about a year ago with, yes you guessed it, lung cancer. Stage 4 and never smoked a day in his life. Of course we proceeded to talk about different treatment methods and exchanged cards. It is truly amazing how small the world gets when you take the time to talk with a stranger. I pray that they can keep fighting in time for a cure. His cancer is different than Bo's and has spread throughout his body. Their storied were very similar that 34 diagnosed with a dry cough...I will never forget the night of no-gas Carolina and meeting another survivor.
Anyway off to bed...
Tomorrow I have funny Addi stories...always
Love to All
Christi, Bo and Addi

Good Evening Everyone - Today we had doctor day. And that is not an understatement. All Day at the doctors for clinic visits. For the doctors defense we didn't exactly run in first thing in the morning. We got there around 10:00 and realized that we are part of the Residence Inn head cases that go on Thursday. First we saw Joe and Marilyn, who are doing really well. Marilyn had her foot surgery and got her trach removed today! Then Jon and Barb, they were there for just a clinic visit as usual. Barb is doing really well since. Then Connie and her husband, they are working and moving along like Bo. Then we get to run our usual Thursday tests. First give vials of blood, then chest x-ray, and pulmonary function test. Bo is breathing better this week than last week. So yeah for that! Then to meet with the wrap doctor who got called away on an emergency, so then back to the pulmonary doctors who are going to try and leave Bo off insulin which will be really nice. She is twee king some other medicines that made Bo pretty happy.
Things are going well and let's just hope they stay that way and we can come home for the weekend.
Love to All
Christi, Bo and Addi

Another fairly uneventful day. Bo woke up with the sniffles a little, so of course I immediately called the transplant coordinator and she said to keep on eye on him. This doesn't necessarily mean he has an infection. She said a lot of people of the sniffles right now due to the weather changing and allergies. So we are off to try some Clari tin and see if that helps. I do have to say that by the afternoon he was much better.
Tomorrow we spend all day at the doctors. Bo has his follow up with the "wrap" doctor and then tests with the pulmunologist. We are also going to set an appointment with our oncologist to stay proactive on keeping the cancer away. Much less we really like Dr. Crawford and Susan. They helped keep me sane throughout this process. I just pray they can always do their magic for Bo.
I hope everyone has a good evening. Bo, Addi and I are off to dinner. Our first family dinner out, I am so excited! (no cooking)
Love to All
Christi, Bo, and Addi - Together at the summer house!

Hello to All - Well another day of rehab done and 19 more to go. Bo has almost been out of the hospital for one week and man does it feel good. Bo feels a little more tired than at the hospital, but now he is having to walk more and do more things for himself so I am sure that is adding to the fun that he is feeling. I do have to send a huge shout out to the Graham family once again, bu this time from Bo personally, he is officially in love with the recliner. I myself am having mixed emotions. I love that he is more comfortable, but on the other hand I think Bo and the chair are becoming one. I will give him a couple more days before I harp on him to get moving some more.
Not much more to post. The days are good, but I am a little guarded becomes sometimes that means another downward ride might be coming.
Love to All
Christi, Bo and Addi

Hello to All and sorry for the lack of posting over the weekend. Bo and I made a secret, well not so secret trip back home. Wow was it so nice to be home. Bo did we miss the Buddies! I do have to say that I think they missed us as much as we missed them. It was wonderful to see all our friends at Touch A Truck. I have attached some pictures for everyone to see some of the fun. It was wonderful, wonderful, wonderful to have Addi and Bo (and the Buddies) under the same roof. We did learn that Bo still have a long road to recovery, but it certainly hoped add more motivation.

I do have to say this morning was so hard and sad to come back. I tried to be all business and remember the big picture that this is temporary and needed for Bo to have the best and safest recovery. With that said, I wasn't sure I could leave Addi at school, she ended up in bed with us 2 out of the 3 nights we were there. I figured that is why we have a king size bed, to fill it up.

Anyway, we hope to be home more often and cannot wait to see more people. Please understand that we have to limit Bo's exposure to people aka germs for the time being, but we will be sure to see everyone soon. Before you know it we will be home for good.

Love to All

Christi, Bo and Addi

PS The picture with the Hot Girls are the ones resposible for putting on TAT! And yes that is a cockpit...

Thank you everyone for the great advice, I will be pumping Bo full of water these next couple days, weeks, months and years. I did want to remind everyone that Sunday is our Annual Touch A Truck event. So if you are in the area of Lake Norman, please stop by the weather should be wonderful! It is from 11-2...please visit http://www.lkntouchatruck.com/ for more information or use the link on the side of the page...

Another day down and things are going well. Bo is slowly feeling stronger and stronger. It is just hard to try and stay awake most of the day when he is used to being able to rest when needed. We spent most of the day at the clinics waiting to visit with the doctor. Unfortunately I was wrong about meeting with the doctor that performed the wrap procedure, that is next Thursday. So today we just met with the doctor, but good news. She is allowing Bo to stop his tube feedings, which will slowly decrease his need for insulin, hopefully. Bo is extremely excited about this because first he doesn't have to hear the pump all night long and this will allow him to leave the house anytime he wants (he used to have to been hooked up from 6pm-8am) So now we just have to nag him to drink tons of water and eat tons of good food with protein. Another step to feeling whole. So now we focus on keeping his trach clean, this will stay for probably another month...Only time will tell.
Love to All
Christi, Bo and Addi

Good Evening - My newborn is resting right now and I am trying to find a place for all our "new stuff". Bo made it through is first day at rehab. (22 more to go, providing there are no setbacks) We were a little overwhelmed with how quickly things are moving and we are trying to stay caught up with our new life outside of the hospital. I do have to say, once again I almost teared up when I walked into rehab to pick Bo up. First let me say that absolutely no family members are allowed to stay while our loved ones work out, they fear that the ones working out might get a little more tired with a loved one there to fuss over them. Boy they do not know Bo and I do they. Anyway I walked in and after finding him hiding behind a poll, I found him pedaling a bike chatting it up with one of the physical therapist. That's the Bo I know and love. She proceeded to tell me he was only talking about me, but then I realized it was his version of the way we met. Oh well he can win that one, this time. Anyway, one workout down and tomorrow we spend all day checking in with the doctors, pulmonary and the surgeon that performed Bo's wrap procedure.
Take care and rest up
Love
Christi, Bo and Addi

Good Morning - The post times are now probably going to very, life is busy, but life is good. To ease everyone's mind, we have officially made it our first 24 hours together. The medicines are a little intimidating, I cannot imagine going home when you did Don and Brenda, but we are getting it straightened out. I just like my day to be a little organized when I can make it, that way we can be a little bit on a whim with Addi. The night was a little like having a newborn again. Every couple hours, minutes, I would look over and make sure he was alright and breathing okay.
Just so everyone knows where we are, but is taking multiple pills, but no IV's right now. He still has his trach which we clean daily and he sleeps with a humidifier over his trach. He is still getting his tube feeds through his GJ tube at night, but hopefully when he diet picks up the feeding will stop, but the tube stays in for 3 months after the wrap procedure, we still have about 2 months to go with that staying in. He is currently still using insulin, but they are hopefully this will stop when the tube feedings stop, we will cross our fingers and pray for that. He is doing rehab daily, today will be his first day, and they will help working his stiff right hand. We know Bo will have a little of hands to shake in the years to come. While out of the hospital we will see the doctor once a week and they will keep a close eye on him and me, so that makes me feel a little better. I think that is all right now. Thanks and we will keep writing for those that want to read.
Love
Christi, Bo and Addi

FREEDOM!
It is with great joy that I announce Bo is "home" (summer house) as I type! I was afraid to say it out directly, but I am sure most of you got the hints. We left today with huge smiles on our faces and a couple tears, from me, down our cheeks. Thank God for answering our prayers and for his continued support of this new chapter and path we lead. I pray that we can continue to have strength and may there not be to many "bumps" on our path to going home.
Love to All
Bo, Christi and Addi
PS - It is pouring down rain today and I can only think that it is God, our Angels and everyone crying tears of joy for this huge step we have taken. Thank you all for your support.

Good Evening Everyone - I hope that you all had a good day today. Bo has made another day off the vent and is doing well. He is really pushing and trying to get himself out of the hospital, I just pray we can make it this time. I am afraid to talk about it, I just do not want to jinx ourselves in anyway. He is looking good and feeling better.
We did have an interesting day that was complex for me. We visited the 3rd floor ICU, the people that fought so hard to keep Bo going and held me up in the darkest of days. Bo has a hard time remembering most of his stay there, it will be forever left in my memory. The nurses promised me that Bo would walk out of there, I promised we would walk through when he could. So today we walked in. I was taken back by the memories flooding in, Room 3 will be a room that holds my hopes and dreams along with my worst fears. It is hard to put into words that emotions coming running back. It is truly a blessing how far those baby steps have taken us. Ironically the nurses, Pam, Nicole, Nicole, Elise and Angie were working today. These girls took care of Bo in his most critical of days. I could not surmise the words to thank them for what they did for Bo. How do you thank someone for saving the person you love most in this world. If any of the nurses from 3rd floor ICU and any Nurse ICU and out of ICU are reading this, Thank You. I know that isn't enough, but what else do you say. Thank you for helping Bo, Thank you for caring more than you should, Thank You for choosing the profession that you chose, Thank You for taking the additional time to hold the loved ones up when you are also taking care of patients. Not only did you help Bo, but you made it possible for me to enter the ICU everyday. I teased everyone today that they never knew how I was going to be when I walked in. They assured me it was alright and "normal", but I know hugs were not part of their job, everyday I got one. I do have to say that the nurses kept telling Bo how good he is looking and well he is doing. I had to remind them that I kept telling them Bo was handsome if they would just get some of those tubes out of the way. I tell you, you all think Addi is funny, but we all know where she gets it from. We did get a few tears from of the nurses and it was everything I could do to not. They appreciated seeing one of their "miracles" doing so well. Their job is hard and everyday I am reminded how differently things could be. God has a plan and Bo and I will do everything to make everyone proud of the life we will lead. We need to make them and you all proud of us. Those nurses sure like to act tough and do their job well, but they care, probably to much. Never doubt that they do not care.
Well that is enough of my soap box, it was just crazy to come full circle. Crazy...
Love to All
Christi, Addi and Bo

Just a quick note to notice another event in our Lake Norman area....check out the local charity on the page...http://www.lungstrong.com/

Christi

Good Evening Everyone - Today was another good day. Bo had his plastic trach replaced today with the permanent metal one. This is more comfortable for him and is the next step to having the trach removed completely. (Do remember that this one was changed once before, but the next day is when he got the fungal infection and back to the vent) Please pray that we can stay on the path to leaving the hospital. We got another day pass today and like always we came back to the hotel to play with Addi. Today we got to watch the new Barbie Movie...she loves her Barbie movies. Then Grams and Papa came to visit. (Addi went to the far, far away house with them to play with friend and family) Justin stopped in the say a quick hello and then we rested the rest of the afternoon. Tomorrow we should regroup and enter the world of Monday and the doctors setting the course for the next week. I hope to post good news soon.
Love to All
Christi (alone) Addi (hopefully sleeping) Bo (sleeping)

Today was good. Bo got another day pass, which means he can leave the hospital for 2 hours, we came back to the "summer house" to play with Addi and try to see how life here might be when that day comes. Bo is doing well, we are concentrating on controlling our breathing on only having positive thoughts.
On that note I want to remind everyone in one week, September 21st, we are having our annual Touch A Truck event in Huntersville/Cornelius...please stop by with your little ones. The entrance fee is $3 with all procedes going to Addi's Cure. There has been so much planning an excitement this year for the event. I am blessed to have a wonderful group of girlfriends to plan such an extravagant event. Also, stop by the silent auction table to check out the amazing children/car items being donated to win. There will be food and concessions as well, so just come right after church from 11-2. Check out for details http://www.lkntouchatruck.com/content/EventDetails/tabid/437/Default.aspx
I will attach the flyer as soon as I can get it in a picture format...
Thanks to All
Love
Christi, Addi and Bo

Just a quick Friday night post. Bo and I had a good day today, almost normal. We went to lunch in the cafeteria with our friends, Joe, Bob and Debbie. Bo's diet is officially pudding and shakes...hmmm that stinks doesn't it. It was nice just to chat outside and hear funny jokes, from Bob, and get to catch up. Bo hadn't walked much this morning, so he walked downstairs and outside. Then we went to visit Marilyn. Marilyn is one amazing woman. Her and Bo's stories are almost identical. She was on ECMO, she had other complications and she lost color and feeling in her feet, like Bo did in his hand. Bo will have a long road of physical therapy, but he still had his hand. Marilyn's feet didn't fair so well and she (if you remember was released about weeks ago from the hospital) but she had to come back to amputate some toes on one foot and about half the other foot. She is amazing with her spirit in handling this situation. Nothing is slowing her down.
This weekend should be a quiet one, so I will post more soon.
Love
Christi, Addi and Bo

Good Evening Everyone - Today was a good day. They gave Bo another day pass - 2 hours leave from the hospital. They want Bo to start to feel comfortable outside of the hospital. I am not sure he is going to have that problem. Personally I think they are much needed, he has almost had it inside those walls. So we came back to the "summer house" and just tried to get acclimated around here. Thank you so much Grahams for the chair, we will just now have to get it moved up here when you all are ready for to take it. Bo desperately feels like it will be needed.
Bo is doing well breathing, he has been off the vent completely for a couple of days and is doing fairly well. We all know not to get to excited until he makes to to the week mark off the vent. This is when the world seems to not want us to leave the hospital. So in a week I hope to post things are still going well.
Take care and sleep well tonight
Love,
Christi, Addi, Bo
PS Today I am happy to say we had another friend leave the hotel and the hospital world, Don and Brenda. I hope they traveled safely and I cannot wait to read that he is doing well. Also please keep Marilyn, from Joe and Marilyn, in your prayers. She had another procedure done this week and will have rehab to work on for a while.
PSS My dear friend Bob is hopefully coming by tomorrow, I am so excited to get a "Bob Hug" I miss him dearly.

Sorry for so late...I had to catch up with friends, pay the bills and time just got away from me once Addi got to bed. We made it back up to Durham. As luck has it, it rained the whole way making my 2 hour trip 3 (one potty break for Addi - and too much sweet tea) then it took me 30 minutes to find a parking spot (no one wanted to leave the parking garage in a down pour I guess) Finally I made it to Bo, who was looking as dapper as ever. He had been growing a goatee still and needless to saw we have not been keeping it up and he looks dashing. He has taken some resting days concentrating on breathing and coming off the vent. He is doing a good job, we just now need to find a way to help pass the time. Tomorrow I hope to talk with the doctors and see how things are medically looking. We established physically Bo is looking good.
It was great to see everyone and we cannot wait to come back to our friends with the far, far away house.
Love to All
Christi, Addi and Bo

Good Evening Everyone - I hope you are having a better evening than me. My sweet little girl does not want to go to bed tonight and I hate to lay her down when she is crying, but now she is way past bedtime and we have school tomorrow. (Sorry Miss Kim and Miss Candy) We had to brush our teeth again and then we went down quietly. Win one for Mom
We had a busy day with gymnastics and Dance Class today. We stopped by work and saw our favorite people. We got to see Baby Conner which now Addi thinks that all babies that come out of tummies are Connor. Except she is having baby Swiper...LORDY (is that a word) Then we ended out night talking on the computer with the Kansas Family and that is always fun.
I have almost made it my 48 hours without seeing Bo. I did talk with his nurse quite a lot today and she said that it sort of took it easy today. Which I am sure it is well deserved, but I did warn him that I will be up there tomorrow to kick it into high gear to get us to come home. He is missing everyone a lot and I hope we can see people soon.
Thank you everyone for your kind words of encouragement. I do draw great strength knowing that there are so many people that care and pray for us (and me when I am nuts) Truly know that you are not going unnoticed, I can feel the strength, hence staying here. Plus I have my "family" at Duke checking up on Bo and encouraging him along as well, Thanks Sue.
Take care and Love to All
Christi, Addi and Bo
PS - Lordy is not a word per spellcheck...now if we can only get grammar check

Good Evening Everyone - I hope that your day is going well. I have to say that I am having mixed emotions right now. Addi and I came back to Cornelius or as Addi says, the far, far away house. She started school last week and attends school Monday and Wednesday, so for a mother's piece of mind I want to make sure with my own eyes that she is adjusting alright to her new class and will be okay if she spends a couple of days a week with family and friends while Mommy helps Daddy adjust home, when that time comes. She is doing great and loves her new and old friends. I do have to say Jenna and Addi must get together and play, Addi loves her.
So here I am in Cornelius freaking out that I haven't seen Bo for my first 24 hours since the first transplant. The nurses have kept me up with his progress and said that he had a really good and relaxing day. They are practicing during the day of plugging Bo's trach so he can get used to breathing through his nose and mouth and not the hole in his throat. Another breathing exercise which is never easy, but it is a step we have to take to get home. He is working on getting his independence and the nurses assure me that he might need this and that they are taking incredible care of him...can I really stay here until Addi finishes school Wednesday...only time will tell. I know it is what Addi needs and Bo and I did swear and promise to always put Addi first. I just stinks that I cannot be in two places in at one time...
Love and take care
Christi, Addi and Bo

Hello to All - A real quick post. We survived Tropical Storm Hanna. Just a lot of rain and some wind...like standing in an open Kansas field with no buildings to slow the wind down. Bo is working on coming off the vent and hopefully by the end of next week we will be vent free. He rested a lot today and is trying to work on getting some comfortable sleep.
I will post more soon. I did forget to mention that Friday they ran another diaphragm study and it appears we are getting more diaphragm function! Yeah - hopefully nothing to permanent there!
Love to All
Christi, Addi and Bo

Good Evening - Seriously is it Friday...Is anyone else so confused? Anyway, Bo's x-ray last night came back alright. Nothing overly concerning, so now we work on coming off the vent at night. I think we are just going to have to pull the band aid quickly, this slow pull is starting to add more anxiety. I doubt anything will happen over the weekend, but I might be surprised.
So we will wait and also wait for Tropical Store Hanna to come through this area. The hospital is preparing for the power to go out and making sure everything is hooked up to the generators just in case. Depending on the time the storm comes through here, My parents are suppose to fly out about the exact time the storm is suppose to come through, so we might wait it out at the hospital. I am not sure our little apartment will be the greatest place, but hopefully this will be nothing.
Take care and be Safe
Love
Christi, Addi and Bo

Good Evening Everyone - I hope all is well with all. Today we had a good day. Bo got a day pass for 2 hours to spend some birthday time with me. We of course went to the hotel and hung out with Addi. Then Addi and I took him back to the hospital, played for a bit and then went and got my parents from the airport. They are going to hang with us until Saturday. Addi is really excited to see "Papa Cow" (Dad). I think she gets away with murder with him. Grandma has to take the backseat at least for a day. Needless to say with all the fun, no nap...enough said.
On another note Bo is working on breathing. Today wasn't his best day, so they are going to run a chest x-ray to make sure there isn't fluid in the lungs. He is retaining a little more fluid in his legs with his new diet, so I am sure we will be adding some medicines to help that out soon. I will let you know more when I find out more.
Take care everyone
Love
Christi, Addi and Bo
PS - thanks for the well wishes...another year, another year with my husband and daughter, who could ask for more.

First - Sorry for last night and for nothing...hahaha little silly there. Second, you are silly with the posts (J - but I am waiting for the shoe contract) Anyway, Addi had her first day of school today, so I am trying to be a good Mom and encourage her along. I know some of you think I am crazy for putting her back in her school in Cornelius, but I need to know along with everyone else, WE ARE COMING HOME. Maybe not today, or tomorrow, but we are not getting comfortable at all at Duke or Durham. Addi first had a dance class the night before and she loved it. She is now a ballerina, although she is more excited for the tap part of the class. For the friends out there that have kids Addi's age, next week is bring a friend to class so I am extending that invitation to you all. (Motion Dance at 6:15 - 7:00) I do think she was even more excited for her toys at home. The kid was all over the place with The Buddies on her heals behind her. She actually got a little freaked out by them and their need to "love" on her. Then this morning off to school (McD's first, no food in the house) (Now I am sounding like my Mom with the play by play commentating, anyway) Then school...she was so funny walking in. She was like I know this place, but something is a little different. As soon as she saw Ms. Meg and Ms. Kim there were running hugs. I am so grateful for God helping us find St. Albans. Our prayers were answered last year and having Addi already comfortable with a program has been one less thing for me to worry about. Thank you everyone that I saw today for your kind words. We are so excited to be back.
On that note, I got to stop in at work to get a few things done and ask for some help with some paperwork. It was so great to see everyone! Your faces rejuvenated me and got me so excited to come home. Please know that Bo and I miss you all and hopefully soon we will get to drop in. I have been trying to leave Bo's blackberry with him, so for anyone that wants to send him and email with questions, kind words or just for fun, please do. He isn't emailing back yet because of his hand, but he is reading them. I will try to get him to type a "k" or "b" to let you know he got it...take care and see you all soon.
Love
Christi, Addi and Bo
PS - Sorry for those I didn't get to talk with...this was just a whirlwind run into town and run back. Talk with everyone soon.

Hello - I hope everyone had a great long weekend. We are doing good hear except I need to get a new phone ASAP, sorry for anyone that has tried calling. Bo has had his phone some, so that leaves me a little out of touch with everyone. I will try to get that done in the next couple of days.
Today we had a good day, Addi and I went to the park and played outside and then more puzzles. She is so fun. Then tonight we had dinner with all our friend - other transplant families staying at our hotel, but as Addi was playing with them she looked at me and said "Mommy, look it's our family," boy are we a hodge podge bunch, but I love them all.
I did spend most of the afternoon with Bo, while Addi naps, and we got to celebrate Labor Day with a glass a grape juice together. Bo also amazed me with walking a mile today. We are working on lowering his oxygen support they have had him on after his surgery. His is doing better from the procedure and now we set the path to leave the hospital for good. I sure do love my family.
Love to All
Christi, Addi and Bo

Good Evening Everyone - So far we have had a quiet weekend here. We started off with a great visit from the Graham family, Addi loved to see some of her friends. Then yesterday and today Addi and I have played, visited Daddy, make more puzzles that I could dream of (which is amazing because I love puzzles and board games - growing up in the country of Kansas winters will do that to you) and visited Daddy some more. Bo has been resting from his surgery and hopefully tomorrow will start working on getting up to speed to leaving the hospital. Tomorrow will probably be another quiet day with the holiday, but maybe not we will see.
A couple of "Addi Stories" to share. I hope I do not offend anyone, but I still working on how to explain everything to a 2 year old going on 10. First we saw a woman in a gown walking around the hospital. Addi pointed at her and said "Mommy, she's got an infection. The doctors will make her feel better." The woman looked at us like we were crazy, but to defend myself. The third time Bo went into ICU I had to explain to Addi why she couldn't see him anymore, therefore the word infection. Second story - The college students are back in town and lot of students are running near the hospital. So I explained that they are exercising. When we were walking into the hospital there was a nice older woman (maybe a little out of shape) and Addi proceeded to tell me that she needed to exercise...we kept walking with our heads down. Third story - we are having lunch outside with the Graham family and Addi has really been using make-believe play and always Disney Princesses - Mulan is a hit right now. Needless to say an Asian woman was outside and Addi proceeded to yell for everyone that Mulan was there. I thought she was pretending until Lena informed me differently.
The final story is that today during Daddy's nap time we went and visited the "castle" - Duke Chapel. Today we found a close parking spot so we went inside. After prayers said, a candle lit, Addi wanted to read a book, The Bible. As we are reading she then proceeded to tell me that she wanted to sing. I'm thinking okay the kid knows good acoustics. Most people are quite in the chapel, not my daughter she proceeded to sing at the top of her lungs, much to the amusement of everyone there. Then before we left she said she wanted to say a prayer, with her hands clasped "Dear God, please make Daddy feel better and come home soon. Amen." With tears down my face I just pray from her mouth to God's ears. Man I Love that Girl
Love
Christi, Addi and Bo
PS - When we got to the hospital after the castle visit, Daddy was up walking more than usual.

Good Evening - Today Bo walked already 3 times as much as he did yesterday...yeah! He had some follow up tests that took most of the afternoon just to make sure the pain he was feeling was "normal" Everything look great on the CT Scans and I got to witness Bo take his first clear fluid drinks. Tonight he actually gets a tray delivered with some clear broth, jello and such. Nothing to write home about, but hopefully next week we can get some shakes moving and shaking...He is resting right now. Addi and I are off for dinner for two. I think tonight I will have someone wait on me...
Have a Great Long Weekend
Love
Christi, Addi and Bo

Hello to All - Just a quick post tonight. Bo made it up moving around today. He wasn't comfortable, but he did it. He spent most of the day without the vent which is the beginning of the end trials we will have to hopefully endure. They performed a Barium Swallow today to make sure the "wrap" was done properly. He passed with flying colors so hopefully tomorrow he can start drinking clear fluids...then to thicker fluids (hello Chik Fi-la) and then soft foods (hello Grandma's mashed potatoes) Tomorrow will be another day of getting his strength together walking and handling the anxiety of coming off the vent.
Love to All
Christi, Addi and Bo

Good Evening Everyone - Well how do I say this...Bo is in a little pain right now. The doctors didn't quite get it right with how painful the after effects of the procedure. We now know having any abdominal procedure isn't pleasant, so Bo pretty much just rested today (with the vent) tomorrow will be a new day and we will try again tomorrow. They are going to try and get him up to walk and try to keep his pain minimal. (not let it creep up on them to where he is miserable...)
Thanks for the prayers and we will try again tomorrow. I am glad he got a day to rest (stable is always good)
Love to All
Christi, Addi and Bo

Sorry for the slow post, it was to much for me to bring the computer and Addi to the hospital during Bo's surgery. He made it through and the doctor is optimistic that Bo will be able to take the swallow test tomorrow and start drinking small amounts of clear liquids. Yeah! He said the procedure went well and Bo handled it like a trouper. (They did say this time Bo wasn't a cheap drunk this time, he tolerance is getting stronger!)
Addi and I stayed to see him and he was resting well on the vent. Now the "tough" part starts and tomorrow they will start taking Bo off the vent full time. I hate that he is drugged up for his final night on the vent....Please pray for him to have strength these next couple days and take on his greatest fear, sleeping without the vent...
Love to All
Christi, Addi and Bo

Just an update to let you know that Bo is in surgery...this will take a couple of hours and I will let you know when he comes out.
Thanks for the prayers
Love
Christi, Addi and Bo

Hello to All - Well we know how Monday's are in the hospital and we are regrouping. I should apologize first and say that they are fitting Bo in tomorrow for his wrap procedure sometime in the late afternoon. (So if you have time tomorrow afternoon, please say a prayer that things will go smoothly with his stomach wrap) It will take him a couple days to get back up so speed. Most people are nauseous with some abdominal pain. They want him to heal up, run all the tests they ran before the procedure and then they will allow him to start with a soft food diet and slowly progress to a regular diet. In the meantime he will keep his feeding tube to help make sure he gets the calories that he needs.
On another note Bo got another "pass" for 2 hours. We got in the car and came and got Addi. I am a little worried about Bo being comfortable at the hotel. I think I might have to go and buy a lazy boy recliner to make him more comfortable...I will have to think about that one. Anyway it was nice again to get out of the hospital. He will probably be captive there for a while after the procedure, we will see and he might surprise us all and jump out of bed Wednesday.
Love to All
Christi, Addi and Bo

Good Evening Everyone - Today was an exciting day for Bo, they gave him a "day" pass to leave the hospital grounds for 2 hours. So off we went. We tried to visit Duke Gardens, but it got awfully hot fast, so then we sort of just drove around. It was great, but also a little sad when we had to go back. Really hard to go back. But we do know and want Bo only to come home when he is healthy enough, so we work out and wait. It was still nice to have Daddy riding in the car with us.
We are hoping tomorrow that we will find out more of when he will have the wrap procedure. They tried to schedule it Friday, but to no avail. So now they try tomorrow and we will see how fast everything happens. (remember Duke time)
I hope to post more exciting news tomorrow.
Love to All
Christi, Addi and Bo

Just a quick post to say I was wrong...not much of a hang over today, but still moving a little slow. They are trying to work on Bo's night sleep, which is when the diaphragm does most of the breathing, (the diaphragm is weak still) so they are trying to figure out at night how to compensate for that. One another note, Bo came back with NO Rejection from the biopsies they did, so that is wonderful news. They are running Bo as low as they can with the immune suppressants to help his body fight off the potential of the cancer coming back. It is great that they are already being so proactive with Bo case. Bo walked about a mile today and rested well, so hopefully tomorrow he will be able to do the same.
Love and Rest to All
Christi, Addi and Bo

Hello to All - I know an earlier post...WOW! Bo was due for a rough day, I just hate it that it happened right before the weekend. He didn't sleep well last night, had trouble with the vent and respiratory, so needless to say he was tired today. When they did his chest x-ray, they found some cloudiness so he had them perform a bronch (camera and suction to pull any fluid out) They also perform biopsies while they were in there (these were due next week - monthly biopsies the first 3 months) We of course will not hear anything over the weekend, so Monday (probably Tuesday) will be a big day of information. Depending on what they hear, they will then look to performing the wrap procedure. So lets pray this weekend, Bo can get feeling better and this will not be a major set back. Well Addi and I are off to the mall to play and see the "Man that Juggles, better known as the Juggler"
Love to All
Christi, Addi and Bo
PS - Bo got some more of those great drugs and needless to say, should sleep just fine tonight...Tomorrow hang over...

Good Evening Everyone - Today was another day of walking and walking. Since the weather was cooler this morning, Bo and I got to spend a little time outside. (Except for bees swarming around the trash cans) it was a nice time. We are still waiting on word for when Bo will do the wrap procedure. This will knock his out of commission for a couple days, then we will work on coming off the vent. This will hopefully be our last procedure for a while. Bo is starting to get claustrophobic in his room, so we try to spend as much time as possible outside of the room. We have resorted the playing cards people watching in the lobby.
Love to all
Christi, Addi and Bo

Good Evening Everyone - Today was a day where Bo obviously thought he needed to catch up on some walking. He walked nearly 2 miles before 1:00...seriously he is wearing a path around the hospital. We spent the afternoon walking, talking and visiting old friends. We visited the 3 floor ICU, they miss us a little bit, then we visiting the 9th floor and saw some really old friends from when Bo had a collapsed lung (twice - last year in August) Dr. Crawford happened to be working these 2 weeks so we got to see him as well. (We also visited with Ennis - Jerrold) Then we showered, semi shaved (Bo is growing something on his face, goatee (spelling)). Then rest up a little...busy, busy, busy.
Hopefully tomorrow we will know more about when they will perform the stomach wrap.
Love to All
Christi, Addi and Bo

Hello Everyone - Just wanted to let you know that Bo made it through yet another procedure. They didn't find anything to exciting in his esophagus, a little burning from his acid reflux, but nothing that should stop him from having the wrap procedure. They are going to go ahead and talk with the surgeons that would do the procedure to see what their schedule looks like in the near future. (They want on the best to touch Bo, but sometimes the best are booked for a while, so we will see). No we wait some more, but this should be his last "surgery"
A side note is that my husband has become a cheap drunk...I warned the doctors that to much of the sedation keeps him knocked out for a while and needless to say, Bo was still sleepy at 6:00pm when they drugged him at 11:00am (which by the way was suppose to be at 8:00 am this morning, Duke Time (Bob))
I hope to see you all soon
Love
Christi, Addi and Bo
PS - I know I have a 3 year old and she is desperate to have her birthday get here. We had to run to Target again tonight and needless to say there isn't much there that will not her happy. October will not get here fast enough for her. (Princess and Barbie already?)

Let me say that Bo is taking the doctors orders full force. The doctor told Bo that she wanted him to walk and work out and if he felt exhausted she would put him back on the vent at night. Well we all know Bo loves the vent so this morning before noon Bo had walked a 1 mile and then another 1/3 of a mile. He then proceeded to walk over a mile on the treadmill, 10 minutes on the NuStep machine and lifted weights only to follow up with another 1/3 of a mile. He also is working on plugging his trach, he started today with 40 minutes with it plugged.
Tomorrow morning he has his EGD, camera down the esophagus to make sure nothing has been going on with the acid reflux. Once that is done the team of doctors will meet and discuss when they believe it to be safe to do the wrap procedure (this will allow Bo to eat solid food again) I pray that they make the right decision and nothing sets us back. I will let you know what they decide as soon as I know.
Take care
Love
Christi, Addi and Bo

Hello All - Just a quick post to say we had another great day. A lot of Daddy-Addi time. They have given Bo free access to anywhere in the hospital (we have to take him in the wheelchair, but we can at least go outside whenever we want now) So outside we went until it was to humid and then inside. Bo is working hard on getting "normal" No more gowns...Not an easy thing to do since one hand is needing much rehab. But we are getting there. (At least we are keeping the hand) They have requested that we bring Bo's putter up and let him work his rehab and things that he will really do. So they ask, we bring.
Another good day
Love
Christi, Addi and Bo

Good Evening - Sorry so late, Addi and made a "quick" run to Target. How come that is never quick...and why did I walk out with so much junk. Never go tired or without a list. Anyway, back to Bo. I thought you all would like to know today he walked over a mile and almost a quarter of a mile without the walker (solo). Today he showered and we talked with the doctor about Bo getting out of the gown and into some shorts. They even asked for his putter to come up to help with the hand rehab. This next week hopefully we will get results for the wrap test and start focusing getting him out of the hospital. We will also try blocking the trach off so he breathes through his mouth and not the trach hole. Big steps to becoming whole again.
Talk with everyone soon
Love
Christi, Addi and Bo

Hello to All - Bo accomplished his eating test today, we will have results hopefully Monday or so. I am sure he was excited that the second bit of food he ate was radioactive eggs and toast (he had pudding and an oatmeal cookie for the swallow test) But hey food is food. The test did tire him out, he eats the eggs and then waits an hour, x-ray, waits and hour, x-ray, waits and hour, x-rays and well they watch to see if everything is still working. After he got back he cleaned up, and got to take another shower, that tired him out as well, but man does he look better. They will run one more test, a camera down his esophagus to make sure nothing new has happened, before the decide to do the stomach wrap. All this is being done because Duke has a huge study, and higher than average survival rate, on how acid reflux effects lung diseases. (Long story short, you can calm the acid from coming up, but that doesn't stop the action of the gunk coming up and into your lungs) Hey whatever it takes to keep him around for a long, long time.
This weekend will be relax, visit and work on talking and walking. He is doing so well, we just got this one last thing to get done procedure wise, then we will work on getting off the vent full time. Right now they keep putting him on at night to make sure he gets a good nights rest. They said once they get everything else together, then it will be easier for him to stop wanting the vent at night. (they help take the pressure from him and therefore hopefully ease his anxiety.)
Pray for a quite weekend and everyone take care as well
Love
Christi, Addi and Bo

Hello again - still posting...sorry. Today Bo had another day or work out, work out and work out. So pretty much he walks and then sleeps. Walks and then sleeps. Tonight Addi and I paid him a visit and let me tell you, Bo was exhausted, but Addi is so excited every time she sees him. She sings to him, dances and does everything possible to get a "big smile" and then she fusses to have Daddy talk really loud. (Bo is hesitant to wear his valve to help him talk, he is a little used to not being able to talk because of the vocal cord problem)
I do think many people have heard about Bo and his double double. Today the Director of Duke's Comprehensive Cancer Center's Assistance came by to check on Bo and see how he is doing. They are amazed with his progress and hope and pray we can go home soon. Tomorrow we are going to do a stomach test and see how his stomach is working. This is the first step in getting Bo's last procedure done. (the stomach wrap for his acid reflux) They would like to get this done before we leave the hospital so that way when we leave, we leave. Let's hope this goes well tomorrow.
Take care and I will let you know how everything goes
Love
Christi, Addi and Bo

Hello to All - I know that I thought I wouldn't be posting as much, but I thought you all would want to know when Bo got to do some fun stuff. Today Bo got to go to the hospital's gym and walk on a treadmill then he did a bike"like" machine. They are going to run some tests soon to see about doing the "wrap" procedure. This procedure is being done to help control his acid reflux. When he gets this done, he will be able to eat some food. He has been fed by a feeding tube, so it is exciting to think about him eating real food. They have to run numerous tests before this will be done, so do not think tomorrow, but soon. So for now, we track laps, laps with the stroller and laps without. We work and get stronger...that is our goal.
Take care and talk soon
Love
Christi, Addi and Bo

Hello Friends - I hope you are doing well. Bo accomplished his first day on the 7th floor. He amazed them with his walking hopefully soon he will amaze them with his breathing ability. They are going to allow him tomorrow to start lifting weights in the gym at the hospital. Which will allow him to venture more and feel whole again. Addi got to spend a little time with Daddy which was nice as well. I do not think, or I hope, I will not have much to post these next couple of days. So remember no news is good news.
Love to All
Christi, Addi and Bo

Hello to All - Well as usual today is Monday and we are beginning a new game plan to get out of the hospital. Bo has officially moved to the 7th floor for some pulmonary rehab, We have yet to meet the doctors and see what their game plan will be, that will be tomorrow morning, but we are excited that Bo will not have to go back to ICU to use the vent again. Right now Bo has a vent in his "regular" room. Another good thing is that Addi can visit her Daddy anytime now. As soon as Bo stops using the vent again he will be able to talk and he can get to hear all her wonderful new stories. I should know more tomorrow morning about the game plan for leaving the hospital this time so tomorrow's post should be a good one, stay tuned.
Love
Christi, Addi and "7th Floor" Bo

Good Evening Everyone - Today was another day of working on getting home. Bo got to spend some more time today with Addi and the family. He is really anxious to get home. He really wants to anything and everything that he needs to do to go home. It appears, we will know more on Monday, that Bo's infection is clearing up. If that happens then we will set the game plan to going off the vent. There is a little bit on a conundrum (hehehe) They are still wanting to move Bo to the 7th floor, the pulmonary rehab floor. If he goes there, there is new doctors and a new protocol which means he might have to start over and do things their way. But it takes a while to get a room on that floor. So in the meantime we are hopefully going to run the same course on the 3rd floor and work on getting home. The problem is if Bo goes back to step-down then it will be harder to get a room on the 7th floor, but we might have a better chance of going home sooner. I am not sure what to wish for other than the healthiest way home. Bo still has to go back through the anxiety of going off the vent, please pray that he can do it one more time (or as many times needed)
Love to all
Christi, Addi and Bo
PS Thank you so much Ms. Alyce and Mr. Vince, we greatly appreciate your kind thoughts and tons of stickers!

Good Evening Everyone - Today was about the same as yesterday, except we watched the Olympics all day. (I think I am addicted) We hung out this morning, rested, Tracia visited (played with Addi while I hung out this morning) Addi and I both visited after nap time and now Bo is resting. They are still waiting to find out more about the infection, but the on-call doctor is optimistic that things are looking better. I am hesitant to get excited (a down swing always tends to happen) but I will stay positive and hope the blood test shows a decline in the infection. Once again Bo reiterated that he is ready to go home, so let's hope the week will be a good one.
Thanks for the love and prayers
Love
Christi, Addi and Bo

Good Evening Everyone - Just a quick post tonight to let you know that Bo is doing well today. They have learned that his infection is a fungal infection in the lungs and are now targeting the antibiotics to there. Bo is doing well breathing off the vent, so they feel that this is a sign in the right direction. They will not know exactly how well the antibiotics are working until we give them some time to work. (time...seriously I am about sick of that one) Bo did spend about 12 hours off the vent today and walked about the same. He is rightfully frustrated, but doing well. He is just ready to go home.
On another note my silly little girl has started to make up stories now. (We have watched Cinderella one to many times) My favorite store is the one that goes like this...Once upon a time Miss Christi and Mr. Bo lived happily ever after. The End...Needless to say that one made tears in the eyes. From her mouth to God's Ears
Sweet Dreams
Love
Christi, Addi and Bo
PS - She has started to refer to Daddy as Mr. Bo when talking about him...Mr. Bo this and Mr. Bo that...the babysitters are really anxious to meet him now...

Good Evening Friends - This week sure is testing. We found out today that Bo has a blood fungal infection. The doctors have already begun treating this with antibiotics and hopefully soon we will see some reduction and the infection clearing up. I wish I could say this isn't a big deal, but anytime you are immune suppressants you do not want infections. They are controllable and treatable, you just always want to be one step ahead of them so they do not get out of control. I do fear that this is one of the less common infections, therefore making it more serious. Please pray that their medicine they are giving will work and work quickly. We have come so far, I just want him home.
On top of the infection, Bo is also having a reaction to one of his antibiotics. Which means he has a itchy rash all over him...not too harmful, quite uncomfortable. On the bright side of things, Bo finally has the Benadryl that he has been requesting for a month now to help him sleep (this is what he would take at home to help him sleep)
So I guess today is one of those days when one things leads to another...hopefully soon we will start riding the ride up, because this down swing is not fun. Bo is resting well and hopefully they will just let him rest over the weekend. I think Bo just needs some down time. Addi and I are off to get some ice cream...with chocolate syrup, sprinkles and a cherry!
Love to all
Christi, Addi and Bo

Good Early Evening - Just wanted to let you all know that Bo is fairing well. I think the entire ICU is disappointed that we are back there again, but we all are willing to do whatever for a long life out of ICU. Bo is frustrated today, but was alert and trying to figure out the best way home. We got a treat and got one of our favorite nurses, Jason today. He always makes sure to treat Bo like a person and not a patient. That is treatment that you cannot put a price on.
Bo will go back on the vent at night for a while to build his lung strength back up and we will wait to move to the 7th floor. I found out today that this might take a week or so because there is a limit to the rooms that allow vents. Until then we will do our thing and just try to get out of the hospital all together.
Love to All
Christi, Addi and Bo
PS - A big thank you to Rachel, Savannah, Byers and Justin for coming up to play and distract Addi. Thanks she had a great time and slept well.

Good Evening - Just a quick post to update on Bo. He is resting in ICU tonight. They are running more tests to figure of why he has a fever. The fever is down, but please pray for no infection. Please pray for Bo tonight also. He is discouraged by today's events. I told him to certainly take today and tomorrow if he needs it to be frustrated, but Thursday we need to have our game faces on.
Thanks
Love
Christi, Addi and Bo
PS maybe a little prayer for Addi, this is too hard for her to understand.

I hate to post in the middle of the day, but we are back in ICU. Bo had a rough night and needed the vent this morning. He is resting now and we will try again. Unfortunately he is running a fever so they are running every culture test known to man to see if and what infection he might have, we will know more on Thursday (it takes a couple days to get the cultures to grow) They are also going to put him on the list for the extended care rehabilitation center in the hospital. Hopefully he will move there faster than later. This will allow him to have a "regular" room with the vent as needed. It just takes some time to get one of these rooms, but sure hope they can work things faster for Bo. (I know that is selfish, but I am not sure how I am going to explain to Miss Addi why she can't see her Daddy any more) She already is asking to see him today. She says she knows how to make her Daddy better....I am about to let her take over.
I will write more when I know more.
Love
Christi, Addi and Bo

Good Evening All - Bo had a good day today. As for now his CO2 isn't climbing as fast as before, so maybe we can stay ahead of it and not go back onto the vent. Please keep our prayers going that the diaphragm is getting stronger and doing it's job. We will know more tomorrow. (Remember Tues is when the doctors meet and discuss their patients and the game plan for the following week. I will email as soon as I can tomorrow.
Love to All
Christi, Addi and Bo

This weekend was one of getting acclimated, but not comfortable. Bo is doing well in step down, but these next two days are the critical times. He went off the vent last Tuesday, so Monday and Tuesday will be the days to determine how his CO2 levels and diaphragm are doing. He is working on some breathing exercises and is walking until he exhausts. There truly isn't much more he can do except pray that the nerve to the diaphragm starts to heal itself and will start functioning better. Tomorrow they will start running the blood tests to see how he is fairing. Please keep praying. We feel the each of the trials makes him stronger, we do continue for prayer to get strong enough to leave the hospital.
Love to all
Christi, Bo and Addi
PS - Please keep praying for Debbie and her family.

Good Evening Everyone - I must start off by apologizing. My fabulous brother and sister-in-law pointed out to me that I am not be precise enough about Bo's progress these last couple days. (I think secretly I didn't want to jinx ourselves) Bo today made it 3 days completely off the vent, no nighttime ventilation. So today, as a surprise to me, they moved him out to step down. He is resting well right now, but we know when he reaches the week mark is when his CO2 has a tendency to rise. So please, please keep praying for Bo's diaphragm. We desperately need it to kick in at full strength.
On another note, please also pray for my dear friend Debbie B. Her husband Danny has taken a turn and has a horrible infection right now. She has been a woman with incredible grace and strength throughout her husband's lung transplant ordeal. Danny and Bo were side by side in ICU, I think because they are both medical marvels. Bo was a double, double lung transplant (not common) but Danny is a double and half. He had his first transplant in February, had a complication in April to where they transplanted only one lung the second time. So if you are following me, Danny has two donated lungs from two different people. He is a fighter, so please pray that he will continue to have strength and fight this infection. It is crazy (and scary) how quickly things can change. Please share in your prayers for Debbie...
Love to all
Christi, Addi and Bo
PS - I promise I won't list everyone that comes into ICU, my support group consists of Bob, Joe, Debbie, and Sue. They are the 4 legs I stand on each day, a part of my heart is always with them and forever will be.

Good Evening Friends - The word for tonight's prayers is DIAPHRAGM - (seriously darn that silent "G") They are working on moving Bo back out of ICU, so we all know what that means. We must keep the CO2 levels down. I did speak with a doctor briefly and he reiterated that Bo's diaphragm is weak and that is essentially what is keeping him in the hospital. They have no "miracle" cure for this other than time and PT. So I told him that since they performed so many miracles already for Bo that I would step up to the plate tonight and get the prayers rolling for the diaphragm. I told him to watch out. There are some things in science that cannot be explained and that is when faith steps in. I believe that Bo will get his diaphragm working and we will be moving along...
Keep believing
Love to all
Christi, Addi and Bo

Hello everyone - I hope that everyone is doing well. We are running the same here. I am beginning to think I may not be able to post everyday. I might begin to post when our exciting (good) news happens. We will see, I might miss talking and pretending I have a captive audience. Bo spent most of the day resting learning more and more exercises for his diaphragm and the muscles that assist the diaphragm. He is loving PT right now...whatever it takes to get out of the hospital.
On another note, I truly know Addi is her Daddy's daughter. She is "selling" it all the time now. Last night she didn't want to go to bed when it was dark outside, so we started stalling. Normally Mommy doesn't humor her to much, but she was trying to hard. First we had to read one more story, then we had to do one more dance, then turn out all the lights, then "Mommy will you lay down with me?" (My first mistake) Then we had to say night-night to all our animal friends in the bed with us...then the cherry on top. "Mommy you want to snuggle?" Needless to say I think I feel asleep first, but I had the best little arms around me. Sometimes I wonder who is taking care of who anymore?
Rest up, because we are going to bed again soon
Love
Christi, Addi and Bo

Good Evening Everyone - Today was about the same as yesterday. Bo was more comfortable without the vent and got some rest today. Let's just hope that with continue throughout the night. The night is always the hardest, less distractions from concentrating on your breathing so it almost becomes and obsession and sometimes not in a good way. I missed the doctors once again so hopefully tomorrow morning we can all meet up.
On another note, please mark your calendars for September 21st, 2008 from 11-2. Touch a Truck 2008. Please see the following link for details of this years event.
http://www.lkntouchatruck.com/EventDetails/tabid/449/Default.aspx
This event was a huge success last year, so we are excited for this years new great cars, silent auction items and enhancements. A huge thank you goes out to the girls picking up my slack...Tracy, Rachel, Robin, Mindy, Alecia, Lena and Candace - Thanks again
Love to all
Christi, Bo and Addi

Good Evening Friends - I unfortunately do not have really anything new to post tonight. This morning they did another biopsy and we will get the results of that back soon. From a visual aspect another doctor thinks Bo's lungs are looking good. He stated that the sluggishness in Bo's diaphragm could be the main culprit to the accumulation of CO2 in Bo's lungs after an extended period of time. I didn't get to speak with the doctor personally (as planned) but I did get to speak with the transplant coordinator and she reiterated what I just mentioned. After speaking with numerous people yesterday, a force of people came forward to help in the rehab of Bo's diaphragm. So Bo is going to work, work and work to get that stronger this next couple of weeks. They are hopefully going to start weaning Bo back off the vent tomorrow. I pray for Bo's strength to endure this yet another time. There is almost nothing harder for him to do and the fact that he has done this so many times is a testament to his strength and fight to live. I just wish sometimes he could get a break and it would be easier. Tomorrow I will sit with him and encourage all day long. We have a mantra we say to help calm our nerves "I Love Addi, I Love Addi, I Love Addi" It always seems to help.
I did get a great visit today. Mr. Fuller came to check on me and some other friends, and he couldn't have come at a better time. I was started to get frustrated with our vicious circle and there was that red St. Louis hat with arms wide open. It is selfish how quickly and easily I feel into them. I hope to have the strength and courage that he has. The Fuller family has been through so much and yet again unselfishly they come to the hospital to check on us still fighting. We talk about our adversities for the day and get the honest reminder that they would give about anything to be there too.
Everyone rest up because "We Love Addi" and we will keep fighting.
Love
Christi, Addi and Bo
PS - I am trying to watch the special, The Last Lecture, Wow what a hard one to get through. It hits a little close to home...what an amazing family.

Good Evening Everyone - I hope that everyone is doing well and staying patient. We are working on getting stronger and stronger. Today we ran the same of working on getting our diaphragm stronger. The best thing for that is to sit on a trach trial without the vent. And then they are putting Bo back on the vent at night to rest himself. This morning we could only briefly talk with the doctors, so tomorrow Dr. Steele is going to come by and talk with us about more pulmonary exercises we can do and maybe tweaking our path to be the most beneficial for Bo getting out of the hospital. It is my understanding that we are waiting on a nerve function to heal itself and to work the diaphragm more efficiently. So hopefully tomorrow I will have more to report and our path for the next week.
Take care and rest up
Love
Christi, Addi and Bo

What a fun day today...Bo and I got to hang out all day thanks to the Graham family letting Addi play with them this weekend. (Thank You!) Bo and I got him all cleaned up for Monday's doctor visit to set the game plan for the week. Then we played Battleship working on Bo's fine motor skills, he let me win. We walked, walked and walked all day long. We are working on Bo taking deeper breathes to pull the CO2 out. So lets focus on getting the diaphragm stronger, Bo relaxing more (no panting) and walking our way out of the hospital.
Take care
Christi, Addi, and Bo

Good Evening Friends - Today we kidnapped Bo and brought him back down to the 3rd floor with our "people" Bo liked his stay on the 7th floor just fine, but we wanted to be with the people that know Bo and his path to recovery. So we kidnapped him, I did promise him next time I would kidnap him from the hospital completely. Other than the kidnapping, today was pretty uneventful. (As I have said before, I will take stable and uneventful any day) We rested, we walked, we talked and we watched movies. Tomorrow we will do the same. Then Monday we regroup and find the next plan of attack.
I hope everyone has a restful weekend.
Love
Christi, Bo and Addi

Good Evening Friends - I hope that you all doing well. Today Bo was a little more frustrated than yesterday, but that is completely understandable. He really wants to go home and to be with all you, talk about work and play with Addi. I think he might of tried to do a little to much yesterday, because today he was a little more tired and breathing a little harder. So we rest. It is hard to know how hard to push because you want to always challenge yourself, but not set yourself back to far.
They are looking more into Bo's diaphragm issue. Nothing really new to report, but wanted to throw that one out there to pray for. If we can get his diaphragm working more efficiently then that should help with lowering the CO2 levels. So we pray.
Bo is resting tonight in a different ICU, the 7th floor. This is just a temporary change not due to anything to do with Bo, more to do with the need for bed space on the 3rd floor ICU. The 3rd floor is the most advanced technology wise. Bo is just using the vent now, but since these doctors know him and they want to make sure he get the best care possible (I think they want Bo to be their pride and joy) They will get him back to his room as soon as possible. Unfortunately on the flip side of this, that means there is too many patients critically ill right now. So please take a moment to think about everyone on the 3rd floor ICU, pray for their family and pray for the amazing doctors and nurses. (It goes to show we are getting the best treatment possible)
Take care and rest up
Christi, Addi and Bo

Hello All - Bo had a good day today. The nurses were so sweet with him and got him outside. We are really focusing on life outside the hospital. I think we (I am certainly guilty of this as well) focus so much on the numbers and the next problems to take care of that sometimes it is just too much. We cannot control most of it and we have to trust the doctors to take care of the rest. We are reminding ourselves that it is in Duke and God's hands. (Most certainly not in that order, hahahaha)
Bo was off the vent most of the day and he is resting on it tonight and probably for the next couple of nights that will be the routine. Then we will try next week to get out of ICU again. They are looking into his diaphragm again to see if there is anything they can do to help with the sluggishness that is occurring on the right side. So we wait, get stronger and attack again next week.
Love to all
Christi, Addi and Bo

Good Evening Everyone - Well as I mentioned before Bo is back in ICU and resting well. He has been on the vent since last night and resting well. He gas levels are pretty much back to normal, his fluid levels are getting better and his hand is healing remarkably well. So we are on a calm path tomorrow. The are contemplating moving Bo to a different floor that allows a few rooms to have ventilators in them so is isn't such a culture shock to move him from ICU to "step-down". I think that would help his greatly. You get incredible care by the nurses (one on one attention) while you are in ICU, that when you go to the regular floor you almost feel like you are alone and ignored (which is not true, in Bo's eyes it just feels like it) So switching him to this other floor will allow him to adjust to the non-one on one attention and then slowing wean him off the vent with the less attention. Small steps - but always in the right direction. Thank you all for posting the encouraging comments to Bo. I just never want him "comfortable" in the hospital. We all need him so much!
Love to all
Christi, Addi and Bo

Good Morning to Everyone - sorry for the slow post. We had another frustrating night. Bo is back in ICU and on the vent. His CO2 levels were on the rise and they wanted to be cautious with Bo. I haven't been able to talk with the doctors yet, but hopefully this afternoon I can catch up with them to find out what the next game plan is going to be. Bo is certainly frustrated, as we all are, so if anyone has the time to send words of encouragement to Bo I think he would benefit from them. I am afraid he is getting to comfortable with this hospital and might need to know that we all need him in the real world...
Thanks and I will post again later
Love
Christi, Addi and Bo

Good Evening Everyone. Bo had a nice and semi quiet evening on step down. Sleep at last! He didn't really feel that great today. They found that they have keep Bo a little too "dry" They really try to keep fluids out of Bo's lungs, so they give him medicine to help keep him "dry" Well if it isn't one things it is another and now Bo needs fluids to help him out. A very smart man told me to ride the waves, not to get to upset with the downward movements and stay a little guarded with with the highs. So they keep watching his CO2 levels with all this going on and hopefully we can stay in step-down.
Please pray for Bo's levels to even out and for his CO2 levels to stay within a safe range...out of ICU.
Take care
Christi, Bo and Addi

Hello and what a weekend! Bo today asked to have his staples out (they went clear across his chest) and they said yes. So we cleaned him up the best we could...shave, hair, nails the works and staples out. Then they came back and said since we were on such a roll, why don't we move on out of ICU! So Bo is once again on step down, hopefully for good this time! He is doing well, just exhausted because we are trying to get his days and nights straighted out again. So I am going to stay with him tonight and tomorrow will hopefully be another great day getting our walking on and getting out of the hospital period!
Take care
Christi, Addi and Again, Step Down Bo

Hello to all and sorry about not posting last night. Between talking with Mom about the Addi's Cure Event last night, which appears to be a huge success! (I cannot wait to see pictures) and watching movies with Bo, I forgot the computer at the hospital. Sorry!
We had a good relaxing day, Bo is on day 3 without the vent so hopefully on Monday we will be moving out of ICU, this time for good. I tease that Bo likes to do things twice, so this should be a our last trip in ICU (cross your fingers) He is exhausted but otherwise fairing pretty well. We walk a lot, talk a little and plan everything to do with Addi. I hope to get her up here to see Daddy today, hopefully that will motivate and encourage him right along.
But on to some exciting news I hear you all tore up the dance floor at the Addi's Cure event! I immediately went to the paper and found http://www2.ljworld.com/news/2008/jul/19/fundraiser_assists_lung_cancer_patient/?city_local
Wow, you all are amazing! A big thank you for everyone going and an even bigger thank you to everyone that helped plan the event. I am afraid to list people so if I forget someone, please add them to the comments, Pa and Mom (aka Larry and Terri Morgan), Cyndi and Ami Harvey, Crystal and Wyatt Dodds, Curtis, Erin and Ryan Morgan, Bill, Jen and Isley Newton, Stephanie Temple and the Temple Family and all the wonderful business donating items and to the Morning Donut Crew, I will be there soon to give my two cents. (Someone has to help you all out, Harry!)
Take care and thank you again
Love,
Christi, Bo and Addi

Well Bo has done it again, he made it throughout the night without the vent! Yeah...he is on his way out of ICU. All he has to do is control his anxiety, control his CO2 levels (he doesn't really have much say in this, but we can hope he can control it) and keep exercising by walking around without his stroller (soon).
We had a really good day, we watched a movie together and rested a little. We talked about the big picture. All the wonderful things we want to do with our daughter when things get better. Go boating on the lake, we want to walk more trails in the mountains - camping (maybe we will start in the backyard), take her to the movies, visit the zoo and teach her how to fish. We are trying not to focus on the day to day issues and keep our eye on the prize, one small baby step at a time.
Wish Bo luck tonight and some peace.
Love
Christi, Addi and Bo
PS Do not forget about tomorrow night's Addi's Cure Event in Kansas. Thank you all that have spent so much time and effort planning the event. Thank you so everyone that is attending. Bo and I are so sad that we are unable to attend, but I promise you next year it will be one huge party!

Good Evening everyone - Bo had another great day. He is one walking machine. Today we walked to the 9th floor (top floor) and visited the helicopter pad. The pilots happened to come by while we were looking out the windows. They asked us if we wanted to see the helicopter up close and of course we did. So Bo walked all the way outside, up a ramp and across the pad. It was nice to do something not so hospital "ish". The pilot even gave us little helicopter wings. One the way back it was a trick to not let Bo's Stroller/Walker go to fast down the slope, but somehow we did it.
Bo is working on staying off the vent tonight so wish him luck and prayers. Please let the CO2 levels stay down during this process.
Love to all
Christi, Addi and Bo

Good Evening - Today was a day of trying to get some more sleep. Bless Bo heart, he is so obsessed with his lack of sleep it is driving him more crazy. I keep reminding him that he needs to be patient, we are still in ICU, so lets not push things to much. We have come so far and he is walking better, hopefully soon Bo will be able to walk without the stroller and use the walker then walk on his own. (Sorry if that was misleading to everyone about his walking, right now he uses a stroller under his arms so his feet push him along, next he will use a walker to help hold him up, then we will try to get some laps in with just himself walking) I have to constantly remind myself we are still in ICU and this will be a little longer to recovery.
Bo is talking a little bit better. But to explain that, Bo can only get a couple of whisper words out. He is working on getting his diaphragm stronger, so in time we will get a couple more and then maybe a sentence. He is excited to talk with everyone, but it will still be a little while longer. Much less it is impossible to get cell phone service in the hospital something to do with the machines and concrete walls.
If anyone has any questions please let me know. If I have confused you about anything, let me know and I will try to explain again. Once we can get stable enough to go to step down, I will have Bo explain the best he can also.
Take care
Christi, Addi and Bo
PS - Uncle Jeff and Aunt Mary thank you so much for the donuts!

Good Evening Everyone - Things here are stable. Nice to stay. Bo did a couple of tests today that he passed with flying colors. It doesn't really change anything other than we know that he is healing. He took the swallow test, which allows him to swallow his medicines and chew up ice chunks. Once he has the procedure that will help control his acid reflux then he will be able to eat more. That isn't scheduled for a while though, so Bo is a little frustrated with the lack of eating but knowing that he swallows properly.
Bo is talking more and more, he can only do it for a short amount of time with the valve in, but it is wonderful to hear him talk and be able to describe what he is feeling. (Currently it is frustrations, but I am just glad he can express anything)
Tonight they are going to try and leave him off the vent and see how tired he gets. So wish him lots of prayers for his CO2 to keep going down, the strength and patience to withstand the need for the vent, and pray that Bo can get a little sleep tonight, Sleep is not an easy thing to do in a hospital.
Love
Christi, Addi and Bo

Hello - Things today ran the same course as yesterday. We were off the vent for 15 hours (all day) and then back on tonight to rest some more. Bo's CO2 levels actually came down a little today, so that is great news. I pray for the doctors so much because Bo (and all the patients) walk the thin line of how hard to push a patient to get stronger and when to let them rest. Bo gives very little wiggle room before he is pushed to far. When he seems to go to far, it sets him back a couple of days. So that is truly frustrating for all. With that being said, we are moving forward.
Mondays are always a fun day, the doctors come in and reassess what the game plan is for the week. So tomorrow I should know how much the want to push Bo, what the obstacles are for the week and where are numbers have moved themselves to....Bo has a tendency to not really fit the norm. Shocker there!
Someone asked me to keep posting what we should pray for, so tonight please pray for the doctors, for Bo's diaphragm to get stronger and for his CO2 numbers to come back down closer to the range they should be in.
Thanks everyone
Christi, Addi and Bo
PS - The Charlotte Observer wrote an article about Bo and our upcoming Touch a Truck event in September.
http://www.charlotte.com/239/story/709726.html
PSS - Do not forget this Friday our great event in Kansas!

Good Evening Everyone - as I mentioned before, Bo had a pretty uneventful day. He was off the vent most of the day and then back on to rest tonight. The doctors are walking that thin line of how hard to push Bo. I have come to realize that Bo is still Bo and currently in the same situation he has been for the past 2 years. What I mean is, every doctor we visit is confused by the appearance of Bo. He looks so healthy (since they found the cancer), but when you look at his x-rays he clearly had diseased lungs. I think the same is right now. Bo looks really good, but his lungs and the muscles that are supporting them (and the same ones that were not able to work to full capacity for 2 years) are still a little weak and need some slow circuit training. So training slowly is what we are doing.
On another note, Bo did get to talk today for about 30 minutes and then it wore him out. He was pretty sweet to me and all the nurses thanking them for all the care and attention they are giving him. He hates that they have to take care of him, but greatly appreciates everything that they are doing. It was good to hear his voice, not matter how weak it is right now. Something new to work on.
On an extremely sad note, today Bob F.'s wife lost her battle today. Bob is the most amazing man, therefore I know Henrietta was incredible along with their family. Please just pray that Bob and his family can find peace and strength these next couple of days. I will desperately miss them all and their support. They are my family when my family cannot be with me. Bob is my friend, my inspiration to walk in the door some mornings (he was the most positive and sweet man I know, know matter what was happening) he is a hero in the struggle that loved ones have while watching their family members fight for their lives. Bob thank you for showing me how to have grace during our most desperate times. I will continue in a manner that I hope will make you proud of me and calling me your friend. I love you all.
Love
Christi, Addi and Bo

Hello all! As I mentioned before today would be a pretty uneventful day, boy do I love those. We just sat and hung out. We started the morning out getting the good news that the tests they were running came back negative so that is awesome and a huge relief. Then Bo did a trach trial for about 4 hours and then we rested most of the day. I think Bo just needs a little time to let his lungs rests from the busy week. They haven't let him try to talk because he has been on the vent (he can only talk when he is off the vent and they plug the trach) So we wait. Bo is coming around and we are now setting day by day goals and prayers. Tomorrow Bo would like to be off the vent for 8 hours, walk 3 times and be able to pass the swallow test so he can drink some liquids (they said they would do the test tomorrow, but we are a little jaded and hope the come tomorrow, but we won't hold our breath since it is the weekend)
Love and Prayers to all, but a special one to Jay's Dad (see comments)
Christi, Addi and Bo
PS - Bob's wife is amazing the doctors with he will to live, keep those prayers coming and pray that Bo can ride the waves of the ICU

Good Evening and all I can say it Sorry...we are on Duke time. They finally got Bo's vocal cord procedure done late this evening and everything looks good, but tomorrow morning will be the true test. He was sedated when I left tonight (awake enough to mouth that he loved me) so we will test those vocal cords tomorrow. With that being said, they put Bo back on the vent to rest tonight (he has multiple procedures done lately and needs some TLC) That will restart the clock of time of the vent, but to be honest I am not as concerned with that anymore. I know Bo can get off the vent, I just want him to do it without stressing his body out. So when we leave next time it will be for good. No more stress. Please pray that he can get the necessary rest and all test will come back negative so we can just rest and move on.
The next couple days should be uneventful with Bo just resting and working on getting his lungs to properly oxygenate getting the carbon dioxide out of his system that built up.
Take Care and Love
Christi, Addi and Bo

Hello all! We made it through another 24 hours off the vent! Bo is getting stronger again and hopefully we will move out of ICU within the next week. Needless to say, he was a little anxious last night to stay off the vent all night, not much sleep, so this morning he did a lot of catching up. A big factor in determining when will be out of ICU will but the biopsy results they did today. That procedure is always a little rough for Bo, so he did some sleeping and resting up all day. We will not know anything for a couple of days. Please pray that the results come back with nothing new, and Bo's reason for CO2 raising is something simple, like his lungs just over exhausted themselves with all his walking to get out of the hospital. That is an option and I vote for it.
Bo is still scheduled to have his procedure for his vocal cords tomorrow. This will happen sometime in the last afternoon, so I will try to take my computer tomorrow so I can post that Bo is up and talking, wouldn't that be great? I sure would love to hear his voice, it has been a long time.
Rest up and we love you all
Christi, Addi and Bo
PS - Bob's wife is holding her own, so keep praying for her!

Sorry it took me so long to post, but now back being in ICU I cannot use my computer. Bo's levels have come back down with the use of the vent. So that is good. They are still unsure what caused this to happen there could be a couple of different solutions or a combination of different things. This could be something we may never have the answer to, but all I care about is that Bo feels better.
He is on another trach trial where they are going to test his blood levels and try to keep him off the vent as long as they can. Bo is extremely anxious again and a little afraid to sleep without the vent, but I know he can do it. I just pray it will not take such a toll on him like last time. His time in ICU will be determined on how well Bo breathes on his own and how long it takes him to do it on his own. This will also determine when he will have the vocal cord surgery. We have now rescheduled for Thursday in hopes that tonight will be a good night.
With that being said, I would like to ask for a favor, please pray for my friend Bob F's wife Henrietta F. She is having a really difficult day and needs all the prayers we can give them. Bob has been my angel through all this in helping me keep perspective, faith and love. I can only hope to carry myself with as much grace as he has and I pray to have the lifetime of love that they share. I know without even speaking to Mrs. F that she is an amazing woman, her husband is truly a keeper.
Love
Christi, Addi and Bo

Hello everyone again...well today we hit another bump in the road. Bo was put back in ICU this morning to use the vent. They want to do this to rest his body. (All the sleeping this morning was the first sign that something was a little off) When they tested his blood gas his CO2 numbers were up enough to require the vent to rest his body. (CO2 is the carbon dioxide being released from your body, Bo isn't getting enough of this out)
They are hoping that with a little rest that this will correct itself in time, we will know more tomorrow morning hopefully. With that being said, please pray that his CO2 levels will lower with rest and time and this ICU stay will be short term. Bo has had a trend of doing everything twice so let's hope this corrects this problem and we will be out of there by the end of the week.
I will write as soon as I know anything
Love
Christi, Addi and Bo

We officially have a clean tube this morning! Yeah, one procedure down 3 more consults to go. Today they have to recheck his gas levels, which involve him getting blood drawn and checking levels that way. Once they receive the results from that one, then they will decide to put the smaller trach in, this should hopefully be done today, we will see, maybe tomorrow. In the meantime we will wait for "The Wound People" to consult on his hand and see what the next step will be on that one. Then we are still on for Wednesday for the vocal cord procedure, let's hope the blood gas doesn't throw that one off to much.
Bo is resting now from his procedure this morning, but I will be sure to write more later.
Take care
Christi, Addi and Bo

What a nice and relaxing day...a big thank you to Lauren (and always Evelyn) Between the two of them I know Addi's is in good hands. (They have been doing some wonderful babysitting and I am greatly appreciative.) Bo and I have been meeting with the doctor's to schedule procedures, they thought that today they would downsize his trach and put the steel one in. This is the first step in closing the trach up and will be much more comfortable for Bo. But once again, the parts were put in this morning and then we wait. And we waited all day, nothing. They said hopefully it will happen tomorrow. Tomorrow we have scheduled the replacement of the feeding tube (one of them is clogged) This is suppose to be first thing in the morning...hmmm I am not trying to sound unappreciative for everything Duke has done, but this is the most frustrating part.
Bo and I did spend most of the day together, with me translating to the new doctors and nurses. I hope this makes Bo feel better knowing that I will say what he wants to say and stress what is important to us. (them not sticking him 5000 times trying to get some blood) Bo is doing well and hopefully this will be a big week of accomplishing many minor medical tasks.
Thanks for the thoughts and prayers.
Love
Christi, Addi and Bo
PS Nothing about the hand yet...