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