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...

Another good and stable day. Bo is getting more used to "step down" and started to catch up on the rest he missed out on when he was anxious to get off the vent. He was a little frustrated this morning, the first thing out of any one's mouth was that they were going to have to put off his vocal cord procedure until Wednesday. That is about the 5th time they have delayed doing this and being able to talk is pretty much number one on Bo's list of things to get done. Welcome to Duke time...I will believe it when it happens. But other than that we had a good day. A lot of walking and sleeping. So far we can accomplish 12 laps in a day, Bo needs to do 20 to leave the hospital (along with the necessary procedures)
We have "tentatively" scheduled replacing his GJ tube first thing Monday morning and tomorrow they will put a smaller trach in that is metal (his one now is plastic) They are calling for another consult on Bo's hand. Everyone, the nurses and OT (occupational therapy) believe Bo will make almost a complete recovery with his hand, but we need the powers that be to confirm that. So we have asked the "wound" people to consult and "vascular" to consult as well. The last thing on Bo's chart was that Bo's hand was necrotic - aka dead, well that isn't acceptable and we are going to get that one looked into.
I will let you know what they say tomorrow
Take care and rest up
Love
Christi, Addi and Bo

I completely forgot before Happy 4th of July!

Needless to say, today was a slow and stable day for Bo. Not much to do when no one is really working. They did find a clog in one of Bo's feeding tubes, this will be taken care of Monday. They say his vocal cord procedure will then be Tuesday. We will see on that one, actually on both of those.

As I promised more information on the Party in Paradise in Lawrence. This is July 18th at the Knights of Columbus Hall - 2206 E 23rd, Lawrence KS 66046 from 5:30 - 10:00. Tickets are being pre-sold for $20 which will include a catered BBQ dinner from 6-8 with music to be dancing to all night long (well until 10:00, that is late enough for me, but I do know those Katzers like to party - with everyone married we will have to find new excuses to party)

To purchase tickets or if you are unable to attend and would like to make donations - we are always still looking for silent auction items, please contact Terri (Ma) Morgan - 785-842-4008 home or 785-865-8522 or Cyndi Harvey (old sister, haha) 785-550-9376 or addiscure@yahoo.com . Thank you again everyone for your prayers and support of Addi's Cure. We will make a difference in this battle...

Love

Christi, Addi and "Resting in his Own Room" Bo

Well we made it through our first night in "step down" Bo was a little apprehensive, so Addi went and stayed at her friend Evelyn's house and I went to keep Bo company. As usually Bo handled everything great and is moving forward to tackling the next hiccups. Part of his stomach problem is that he has a clog in his feeding tube, hopefully that will be corrected today. (with the holiday everything is short staffed and I am not sure what is getting done) Then next week we will have to procedure for his vocal cords. (I think this is the most frustrating for Bo, not being able to properly express his needs. We are getting by right now, but I know he would like to talk) With all that being said, we expect a quiet weekend with nothing really changing except for him walking more and more.
I will post more tonight and some great information about the Addi's Cure event being hosted in Lawrence Kansas on July 18th. We certainly hoped and planned to be back for this event, but that is still up in the air for Addi and I. We would greatly appreciate any help and support we can get at the date gets closer and closer. I will attach the flyer tonight when I get on the proper computer. My family and friends have been working really hard on this event (considering we have been AWOL for the past month) They have some great KU items being donated and if anyone else has anything please let me know. More tonight....
Thanks for all the help and support
Love
Christi, Addi and Bo

As of 1:00 Bo is officially out of ICU! We are both a little nervous, but excited at the same time. Candice was the perfect nurse this morning, she just cut the cord and said see ya! Bo's CO2 levels we up some last night, which is what held up the transfer this morning from the doctors. They are going to watch him extremely close and make sure those levels go down to a better range. They were trending down this morning which is why they went ahead and discharged him to "step down"
Now our main goal is to walk, walk, walk. This really is the best way to combat the CO2 levels, so this is what we will do. The nurses on his floor were so excited to have him that they actually came back to ICU to tell him that! I am afraid he is going to get a big head with all these woman fussing about him, but we all know there is enough of Bo to share the love. The more people that love him the better. He is still very limited on visitors at this time due to his inability to talk (hopefully that will be taken care of after the holiday) because of his immune system they really limit any visits to max 15 minutes and they want to know who has already been exposed to him, just until his body acclimates more, and they also are closes monitoring and giving him medicines. So hopefully we can open the doors to a few people coming up to say hi, until then I will wait to give the word.
Thank you everyone for your prayers, please keep praying that Bo stay healthy (no infections during this transition) and that he continues to keep getting stronger and stronger.
Love to all
Christi, Addi and "Step Down" Bo
PS I do have to say we have truly come full circle, the nurse from way back in the day that checked us into the hospital, May, is Bo's nurse right now! She wasn't letting anyone else touch him.

Hello to all! We have now officially made it 48 hours and counting. For those of you following previous posts, this means tomorrow morning they will again discuss moving Bo out of ICU and into "step down", a regular room. I am a little hesitant to talk like this because first I do not want to jinx ourselves, but second Duke runs on their own time. So they say tomorrow, but I could certainly see us getting the approval tomorrow and then have it not happen until after the holidays. (I have learned that although the hospital is open on the Fourth of July, that doesn't mean everyone is working and things of this nature will get done) But hopefully tomorrow afternoon I will be posting from Bo's "regular room."
Bo is doing well and trying to adjust to all this fussing that everyone is doing. Everyone in ICU is so excited for Bo. Today I had a surreal reminder on how things could have turned out when one of our favorite nurses was talking to me and I knew something was going on in the room she was in charge of today. I asked her how she was doing and she immediately teared up All I could think to do was hug her and remind her that she helped save my husbands life. Not that Bo's life is any more important, but that she has a very difficult job, she does her job well and we will forever be indebted to her for her kindness, abilities and friendship. The nurses in ICU are truly inspirational people with the work they do and how quickly they care. (I do keep threatening them that when we walk out of ICU that I will "forget" to tie the back of Bo's gown as we walk out. hehehehe) I am so excited for this next step, but a little sad to be leaving my "friends" that have taken care of me as much as Bo for the past 6 weeks. (6 weeks, can you all believe that)
Take care and I will post again tomorrow as soon as I hear anything
Love
Christi, Addi and Bo

Bo did it! He made it for 24 hours! Yeah! I couldn't be more proud! A big thanks goes out to his nurse last night Rex, he wasn't going to let Bo fail. Bo was so excited this morning and exhausted in the same breathe. He slept the rest of the morning on me, but that is quite alright. (I still like to watch him sleep, reminds me of the sleeping Addi.) Now I do have to say with the good always come a little hiccup.
The doctors are working on some minor hiccups right now. Bo's stomach is have a few issues that they are keeping an eye on. Hopefully with medicine they will correct themselves, this is something time will have to tell. Another hiccup is Bo's vocal cords are "asleep" possibly. Today they started working with him being able to talk and Bo could barely get a whisper out (not for a lack of trying) They might need to give his vocal cords a little boost to wake them up. They do not foresee this being a permanent or long time problem, just something that needs to be corrected for Bo to function the way they want him too.
With those issues being handled and Bo being "Special" to all the doctors and the nurses, he will now have to breathe without the vent for at least 3 days before they will let him out of ICU, it was 2 days before. Not a big deal in the grand scheme of things, but Bo sure was disappointed. I keep reminding myself that Bo is where we all were a month ago. Every time a hiccup happened I would panic. I felt like the doctors only talked in problems, which they do, but that is alright. I will keep reminding myself and now conscious Bo of what we have accomplished (what he knows about so far) and where we still want to go. We will have these hiccups for the rest of our lives, but now we at least have the rest of our lives to deal with them.
Take care
Love
Christi, Addi and "Breathing on His Own Bo"

Today was a good day, any day stable is a good day. So far Bo has been off the vent since 6:00 and is going to try to go as long as he can tonight. They removed his catheter today, so we are down to 3 tubes (I think I missed one the other day) He has one tube draining to a small bad, his feeding tube and his trach. When he walks now he just uses the walker, not bags! Amazing or Addi's new favorite word Awesome!
Speaking of Addi, she and I with Cousin Joe and Aunt Andrew went to the Life Science Museum today. They both had a great time, just humid running around. By the end of the morning Addi looked at me and said, "Mommy, let's go home, I am tired!" Anyone that knows Addi knows that is no small feat! She napped well for the babysitter all afternoon. I think I will probably pay the price tonight. We are off to do laundry and pay some bills.
Take care and everyone have a normal night.
Love
Christi, Addi and Bo

Today has been another day a great focus. Bo is walking further and further everyday, they are really pushing him so that as he gets stronger, he will be able to come off the vent completely. I really think this will happen within the next week. Then we will move to step down for a while. Bo has to have one more procedure done called a "wrap" procedure to help with his acid reflux. This will leave him in the hospital for a couple days feeling just awful, but in time that will pass. (nausea) Once this is all done, I will let you know when we can visitors. In ICU it is very limited and until he gets through his final procedure, they will limit who can see Bo. Germs will be another major factor, he is on extreme immune suppressants, so we will always have to be extremely cautious around Bo. Who knows what germs we are all carrying. I only mention this because I know everyone knows how far we have come and are anxious to see Bo (as we are to see you) Just know that they are still limiting us and being extremely cautious with Bo. We are still in ICU, so we just have to keep being patient.
I did want to mention that Bo's labs came back and there didn't appear to be any rejection, or any cancer. His new lungs are working great! Score one for Team Bo!
Take care and I know I will post soon that we are moving on to another step in this process.
Love
Christi and Addi, and Bo

We had another great Saturday, it is truly humbling to think how far we have come. Numerous nurses, doctors, residents and everyone stops by to check on Bo and see his progress. He is still not fully aware of everything he has gone through and accomplished (the doctors think is it best to not tell the fully story until later, they do not want to overwhelm him) but my we have come far.
Today Bo walked 2700 feet total. The breakdown goes 1000 with a little oxygen, then 700 with nothing assisting him and another 1000 with nothing assisting him. On top of that he has been of the vent since 9:30 am and still going strong. But that isn't the best part, today he allowed himself to fall asleep with the vent off for the first time! Yeah! This is huge in himself gaining confidence. This is the first step (of many) that will get him to the wonderful 48 hours he needs to get out of ICU. My how I would love for him, Addi and I to celebrate the 4th of July together. I certainly do not want to get ahead of myself and we will work something out if he is still in ICU, but how great would that be!
Everyone sleep well also.
Love
Christi, Addi and Bo

Another quick post for tonight...Addi and I went up to see Bo, he wanted to walk again and with his little girl. Addi just told me "when Daddy sees me, he is going to smile real big" It sure is a good thing he didn't let us down. Bo also decided that he was going to go for another 2 hours without the vent to make it a full day. He did let me know that he was going to do this for Addi, but I know there might be a little something for me in there. (then again he still might be miffed about the brain transplant comment)
Take care
Christi, Addi and Bo

Well Bo did it, he made it 10 hours and 45 minutes off the vent! He still has yet to let himself sleep off the vent, but I know in time he will be able to do it. He has come so far that I know he can do it. (I did mention to him today, (I was trying to ease his anxiousness,) that he didn't have a brain transplant, he had a lung transplant. His brain works fine, well, as well as it did before, and that it would tell your lungs when to breathe. He rolled his eyes at that one. My Bo is certainly coming back)
He also initiated walking 3 times so far today. 400 feet, 650 feet and 400 feet respectively. It is very Bo'ish to see him walk. As he walks he has to head nod to all his new friends and they are all hollering "Way to go Bo" A couple of nurses even told me that he invited them to come and stay at our house for a small vacation when they had time off. (Now I know Bo is coming back to me)
I am trying to not let myself get to excited, but I feel like Addi and I might have to go out to dinner and celebrate Mommy at least having a good day!
Love
Christi, Addi and Bo
PS - They did take the final 2 tubes out! We are tube free! (Well except for the feeding tube, trach, and catheter, but I think those do not really count) Bo is much more comfortable that is what really counts.

Someone really needs to get me a thesaurus...Today was another, dare I say Amazing day. That doesn't quite put it into the right words, but I will stick with it. He once again started his day at 5:00, by 6:30 he was on another trach trial for 4 1/2 hours...seriously Wow! Then he walked 2 times before 11:00. At 11:00 they did the 1st of many routine biopsy's of the lungs to check for rejection. I know saying those words will panic us all (it seems way to early to be talking about it) but do know that there is many different immune suppressant that can be given for rejection. I compare it chemotherapy, it might take the doctors a couple different tries to get the right formula to keep his lungs at peace. (I will not panic if they didn't get it right the first time, so no one else is allowed to panic either)
So the biopsy was done at 11:00 then Bo rested some. Walked again another 400 feet and was on another trach trial for 5 hours! That is almost 10 hours today! The nurse expects him to rest well this evening and start early tomorrow. Today we also removed all additional medicines (except what he will be taking on a daily basis) We remove his A-line (measured his blood pressure internally) and tomorrow we will hopefully remove the rest of his draining tubes. That means when he walks tomorrow he will not have to take his IV poll with him. Just me and him (and the nurse for a little while longer)
Today Bo also asked me what he had to do to "get out of here" I almost cried. But to let everyone know, he must be off the vent 48 hours to get out of ICU and then he must walk 20 laps (not quite sure how far that will be) to get out of the hospital. Then we will have rehab for 23 times. It is amazing that I can even begin to mention my previous statements. I know it will probably take a couple weeks, but I cannot wait. Patience and he will be at the "summer home" before we know it!
Love
Christi, Addi and Bo

Good Evening - Bo had yet another amazing day. He walked 3 times today about 400 feet each time. And 2 of those times without the vent and pushing the stand that assists him. This stand holds all the tubes (still draining fluid from his chest, but down from 9 tubes to 2) and machines to monitor his vitals. Normally we have Bo, a nurse with the IV poll, PT helping Bo push the stand with the tubes, respiratory working with the vent and me following behind with a chair in case he gets tired. Now we have me and a nurse! We are moving and shaking big time today. I mean that is 2 times more than he has ever down without the vent both times....plus on top of that he was off the vent for 6 hours, 3 hour intervals and maybe one more time tonight. He was quite exhausted when he finished all that, hopefully he will sleep well.
I hope everyone else does that same
Love
Christi and Addi
PS - I wanted to send a little, actually a big, THANK YOU, to Steve and Tara...Addi loved the toys, Bo the movies (I guess my movies were stuff he has already seen). So many people have been so generous, I promise some how we will repay you all.

Alright a little change in plans this morning. Bo decided to wake up at the crack of dawn, 5:00, so they started walking him at 6:00. They are going to walk him 3 times today. He just finished with walk number 2. Amazing. More importantly, Bo walked without the use of respiratory pumping air into him, which means he walked without the vent! He is having another trach trial right now, so I will let you know later how things come along, (I think the difference between trach trial and breathing without the vent, is trach trial is just a term they use for temporarily being off the vent, but while he is breathing on his own, they are giving him a little extra oxygen flow. So he is breathing on his own, but with a little pure oxygen to help just a little bit.) I hope that makes a little sense.
Take care
Christi and Addi

Hey just me again today...I just wanted to update on what Bo has accomplished today. He walked 400 feet, did a morning trach trial for 3 hours and then another one this afternoon for 3 hours. He is pushing himself right along. Tomorrow should be a couple 4 hours intervals, let cross our fingers.
Sleep tight
Love
Christi, Addi and Bo

Good Afternoon everyone - I snuck back to the hotel today to a little R&R when both Bo and Addi are resting. Bo has had a busy morning, they walked 400 feet and he just finished his trach trial of 3 hours. He is resting now and will do another one if not 2 more. Hopefully by the end of the week he will be off the trach all day and just resting at night on the vent. Bo is having a hard time right now trusting himself to sleep without the vent on, he concentrates deeply when he is off the vent and just cannot quite let go of that fear. Please pray to give him confidence and patience with these trach trials.
Someone asked about his hand. This is looking much better. I actually saw if for the first time in a while this weekend when they changed the bandages. They compare his hand right now to someone that has had severe frost bite. The blisters are slowly healing (they cover all his fingers and the palm of his hand) They leave the dead skin on during this healing process, so it doesn't look pretty. But Bo does have movement in all his fingers so that if definitely a start. He hand is still really inflamed, but in time when he gets more movement they will be able to determine the extent of the damage (if any - let's hope). Sorry that was a long answer, but to use Bo's words, "It looks Nasty"
Love
Christi, Addi and Bo

Good Evening to All! What a big day...Bo made it his usually routine, but is stretching it out further and further. Today he made it one trach trial for 3 hours! Amazing! Bo is a little worried about how they are pushing him, but he is hanging with it and trying his hardest. He is now up to walking 400 feet on top of all his time off of the vent. He is doing such a great job and Addi and I even got to fit Kung Fu Panda in tonight. Way to much popcorn and Care Bear Gummies!
Love
Christi, Addi and Bo

I just had to post again...Bo has been in the trach trial since 6:30 and going strong...boy I love him. He is working so hard today! He has already been off for 1hr and 45 min and then another 2 hour plus some...
Love
Christi and Addi

What a great but tough day we have had so far. We ran the same schedule as yesterday. Bo did a trach trial for 1 45 min first thing in the morning. The we saw him walk around 12. Addi just yelling throughout the floor "I love you Daddy" and "You can do it Daddy". She is such our best cheerleader! Then another trach trial for a little more than 2 hours and he will do another this evening. I just hate not being there with him, I know he understands and wants me with Addi some, but talk about loving 2 people equally.
Everyone rest up, because I feel like this is going to be a good week.
Love
Christi, Addi and Bo

What an end to a great day...Grams (Jo) came up today to help with Addi and visit Bo. We had a grand time. We went to the hospital and got to see Daddy walking, and he was going super fast! About the same distance, but maybe a little farther, let's not sell him short. Then Bo went and did 2 more trach trials, one for an hour and another for another 1 1/2 hours. That is 4 1/2 hours total! Amazing! Bo was exhausted, but we are taking more baby steps in the right direction. Tomorrow he has the same schedule, so hopefully we can see Daddy walking down the hall again!
Love
Christi and Addi

Good Morning - I just had to share with someone so I thought that I would share with everyone, Bo made it through another trach trial this morning - 2 hours! The longest yet...they are letting him rest now and then he will walk around lunch time and then another trial this afternoon. He also had the nurse call me to bring him some more movies...thanks Rachel and Justin, he has almost made it through the ones you left. So anyone in the area I might have to bum a few movies from you!
Love
Christi, Addi and Bo

Good Evening again - Today was a fun day today. Addi and I hunted for a neighborhood park and found one with some kids for her to make friends. She got all hot and sweaty and used some of her energy and then when we were driving back we found a Gymboree that had a class she could be part of where she can play, paint and dance around with kids her again. She called it "Gymboree School" (I think she misses playing with kids the most) Then she played with Miss Evelyn and tonight we went to Southpoint mall and found friends of friends, Kate, Zach and Zach to Addi played with Zach for a while. What a great day for her!
Bo had another good day as well. He walked again 300 feet and then had 2 trach trials this afternoon and night. One was for 45 minutes and the other for an 1 hour, before he pootered out (is that a word?) He should sleep well tonight and the tomorrow we push his lungs some more.
I did want to take a moment and thank everyone for following, encouraging and being a part of this incredible journey. I cannot thank you enough for the cards, presents, companionship and encouraging words on the blog. The Johnson Family every day makes it through because of all of you. Please know that we do not and will not ever take you for granted. We are truly blessed to have the friends we have, for the ones we have met face to face and the ones that are friends through this blog. I cannot wait to see all of you soon.
Love
Christi and Addi, and Bo

By the way spellcheck does not think pootered out is a word, but I am sticking with it! ("tired out" for those not following the Christi isms)

Good Evening - Today is a day where I am just proud of my family. Addi is such a sweet girl that is taking everything in stride. She hasn't given me (or Bo) any trouble with this whole situation. She talks about her friends all the time, but never complains or cries (unless we are doing our typical 2 year old I want my way - too stay in the pool all night) She is so funny....
But on the other hand today Bo walked the farthest yet, about 330 feet. They walked him this time out of ICU and into the "step down" rooms. I think that was really good for him to see his goal and to see all the other patients doing the same thing, walking and trying to get out of there. He also has had two trach trials today, one for 40 minutes and another for 1hr and 20 mins...yeah, the longest yet! I am so proud, they are going to let him rest the rest of the evening and then try for farther and longer, respectively...what a great day!
Christi and Addi

Good Evening - Today Bo made baby steps in the right directions (again). He walked farther than he has before, amazing. He did tell me that PT lied to him on the distance and he wasn't to happy about that, but Bo might have needed some negotiations to spark his day up some. When I left to go home Bo had done 3 trach trials, 20 minute minimum and still had 3 more to go. They are getting him along nicely. His doctor stopped by and satisfied with this progress. Of course, he wanted him off the vent, but I think he was alright with the method they were using. Interval Training is what he called it.
On a side note, Addi and I had a good morning. We went to the Life and Science Museum, we are now members, she loves it there. Partially because we make friends for the day and second because they have a butterfly exhibit. We certainly miss our friends at home and our great play dates, but she is such a trooper and just makes friends at the parks. I did find some great help during the days to babysit her when I spend time with Bo. Thank you everyone for your assistance, and I will still call some of your for help. Right now I am just adjusting to it being me and Addi, but soon enough we will get a grip and hang out with friends.
Take care everyone and sleep tight.
Christi and Addi

I feel silly sometimes putting the same thing every day, but I learned early that stable is good and consistency is better. Bo is doing better, a little more sore today but good. He tired a little today walking, but I can imagine his legs are more sore from yesterday and him long walk. He did almost the same distance, just a little less. But on the up side he was off the trach more today. The got him off 6 times 15 minutes each. So about an 1 1/2. Awesome, I did threaten to have his PT from Charlotte come up and give him a hard time if he didn't get his act together and try his hardest every time. He was asking for Respiratory then....I needed to send a big THANK YOU to my parents. My Mom left today, she has been taking care of Addi and me since almost the first phone call. So thank you, we miss you already. Also a big thanks to my Dad for working things out so she could be here, we hope to see you all real soon.
Take care
Christi and Addi

Good Afternoon - Well we had another busy day today...it is crazy to believe that a little over a week ago I was writing how Bo could turn his head a little bit. Well today he walked 750 feet! He truly was amazing and I got to show him off to all my "friends" in the waiting room. They were all cheering him on, he wasn't quite sure why (I obviously talk too much) He is really making strides physically. PT really believes that when Bo gets physically stronger he will be able to come off the vent. Bo did come off today two times for 25 minutes each time. That is all they wanted to do for today, so he did it. Such progress!
Christi

Happy Father's Day to all the Dads out there. We certainly think our Bo is tops right now. Bo had another good day walking. He walked down the hall and I got to see the amazing progress that he has made in the past week, I couldn't be more proud. They have not been able to really try with the trach lately due to: first to him been tired from the other days and also because his pain medication have been making him extra sleepy right now. He has been in a lot of pain at night and last night they gave him enough doses that they carried over to today and he rested most of the day. They have removed 2 of his hard tubes that are there to help keep his lungs inflated, so I would think that would have to make him feel better. They are going to run a test tomorrow to check his diaphragm and make sure there isn't anything in that matter delaying him coming off the ventilator. His other numbers are looking really good...so we keep praying for Bo's continued strength and patience.
Love to all
Christi

Good Evening - Today was a busy and eventful day for all. Today I took Addi to her "best friend" birthday party, Patterson. Now that Patterson is 3, Addi knows she is next, except she thinks next means tomorrow. We had a great time at Dan Nichols Park in Salisbury with all our friends. We apologize for leaving so early, but we had to get back to see Daddy. Happy Early Birthday Patterson and it was great to see everyone.
While we were away Daddy had an extremely busy day, they made Daddy walk. He walked around the ICU some with the help of Tristin and Chuck. Amazing! Considering last Friday Bo couldn't hold his head up, now he is walking. We continue to work on not using the vent, all in time. Bo is doing such an amazing job, I just wish he knew how great. Right now they are not really allowing any visitors, so I apologize for anyone that wants to see him, we cannot even see him. They really want to concentrate on getting him moving and working on the vent, so we wait. I will wait all day in the waiting room for my 5 minutes and the wonderful progress we are making.
Thanks to all
Christi

Good Evening - We had another baby step today. Bo was able to stand today, with a little assistance. Talk about amazing. He is almost ready to start typing on his computer with one hand, so before you know it he will be an emailing fool. Bo is still a little frustrated with the trach. They pushed him to hard yesterday so today was another day of recuperation. They might take another try tomorrow, or they might just wait until Sunday. I wish Bo wouldn't be so hard on himself, he is doing to great. He doesn't really know what he has gone through, he is just aware of where he is right now. The doctors do not want to alarm him of everything else, they just want him to focus on getting better. So please pray that Bo will not be so hard on himself and has the patience to overcome this huge hump.

Christi

Good Evening - As I mentioned before Bo had a great but hard physical day. He was a little tired, but in good spirits. Addi made a special sign for his room and we got him a portable DVD player for him to watch some great movies, maybe that will help the time pass between PT and trying with the trach. I cannot imagine how slow the time moves in that room. Probably almost as slow as in the hotel room waiting for him to join us.
Addi and I had a good, day of playing and making new friends. We playing with Sue's grandchildren Lexie and Wesley, they were great fun in the pool. Tomorrow we are looking at camps and museums. Fun fun fun
Christi

Good early evening to all...Bo had another good, but hard work out day. Physically he is getting stronger and stronger. He is gaining more mobility everyday which is so impressive. They are also working getting him off the trach. Please pray that Bo can trust these lungs and have confidence in the lungs ability to work. He is a little apprehensive and gets worked up with they turn the machine off. I know it will all click soon, just never fast enough for Bo.
I think I have finally decided that I am going to try and find a babysitter for Addi and then enroll her in camps around Durham, week to week. That way with visitors and friends we will have flexibility to play, but reliability to watch her during the day. I have call a few of the contacts given to me to see if they are still available or interested, please do not feel any pressure to help. To start with I am thinking M, W, F from 9-1 and then Tues, Thurs 2-6 I might switch all days to afternoon (when Addi naps), this is flexible. Thanks for every one's help.
Thank you for the prayers and well wishes
Christi

Good Evening - Today Bo did so much that I am so proud of him. He was able to wiggle his legs and move his left arm. He is trying so hard to get stronger and slowly succeeding. I know Bo would want to move mountains with leaps and bounds, but hopefully someday he will realize that he is doing that. We also got the ventilator down to the lowest settings, so now we are just working on getting his diaphragm stronger to push the air out properly. They let him stabilize today with the lowest settings and then tomorrow will be a huge day of trach trials (breathing on his own) This is scary for a lot of patients, but I know with practice he can do it.
As Bo is waking up for the meds more and more, he keeps wondering why the entire staff is checking in on him. I just keep telling him because of me and my craziness, but in all honesty they are all pulling for him. He is truly a miracle. There is nothing more precious than knowing my husband's will to live....
Christi

Good Morning - Sitting here with Bo right now, I snuck the computer back and we have an awesome nurse, Jennifer. We just found out that we are neighbors with our new home...scary. Lena, she is moving into the Hamptons, how funny. Anyway Bo has had a busy morning, PT just came by and had Bo moving some more. He did a little more than yesterday in lifting his legs and arms. They have also added to Bo's diet protein, whey powder, and some other energy boosters. I think Bo being younger means that he needs more support diet wise and it is just taking them a little bit to figure out exactly how much. He is alert right now and I have been reading him all the comments. Some of you are comedians...others he just smiles to. It is good to see that Bo is registering who you all are. Sometimes they have him on so much pain meds depending on how much PT, he isn't really there. But this has been a good morning.
Take care and I will post more soon
Christi

Hello everyone and good evening. We are all moved into our new "summer home." Addi is doing well on our little adventure. She is such an amazing strong girl. Bo had a tough work out day today. He sat in the chair for a while this morning and then Physical Therapy (PT) came by. By the time they got there, he really wanted nothing to do with them. So he "went to sleep". That is when I know Bo is in there. Tonight I got to spend some time one and one with Bo and he was Bo. Still extremely frustrated that the communication isn't there with reading his lips, but I am getting better slowly. I do have to say that he had two great nurses today as well, Jason is awesome and getting me and him to understand where we both are and Reagan, was just on the same page as him. He was more comfortable. He is slowly getting stronger, controlling his head more and wiggling toes. Small steps to this long recovery, but we are getting there.
Take care everyone and sleep tight.
Christi

Hello everyone...the Internet is still down at Duke. Bo had a tough day in the sense that they are making him work to get stronger. Physical Therapy came by and started in on Bo to get stronger. He is a big fan of this, but we know this is our only way out. On top of this they are still working on the vent machine. They are taking small steps with this one and hopefully they will work. The concern they have with the vent is Bo becoming dependent. There is a fine line they walk of pushing him as hard as they can and pushing him past the limit. I hear different stories on what to expect from this some say when he is physically stronger he will be able to get off the vent and others just say it takes time. I hope either way they are right.
I came home tonight to see Addi and I am happy to say she was just like "Hello Mommy" and went about playing. She is moving to Durham with me and my Mom tomorrow, so wish me luck getting her adjusted.
Take care
Christi and Addi

My deepest apologize for not posting all day. You all care so much, the least I could is post, but in my defense Duke's Internet was down all day. We had a good day. Bo moved to the chair for about 5 hours and breathed really well. They are slowly trying to build up his strength again. Lying there for as long as he has, has really taken a toll on his muscles, but they are now really starting to work on him. So hopefully by the time he comes off the vent, he will be strong enough to walk out. I really enjoyed today as well. We had a great nurse that let me sit with Bo most of the afternoon. It was nice (wonderful) to sit with him and just watch TV together. I got to see him sleep peacefully. It reminded me a Addi sleeping, one of those things that makes your heart sing. Even as I type right now I can feel my heart pounding. When you love someone, make sure you love the completely.
His hand to looking much better as well. They dressed the bandages again and his hand still is a complete blister, but it is pink blister and not black (except for the tip of his pinky) Thank you for all the prayers. His kidney levels are lowering slowly, along with his liver levels. Things are "trending" in the right direction. Small steps, huge prayers and we can make the journey.
Love to all and again sorry for only one post today
Christi

Good Evening everyone - We had a exhausting day, both of us. Bo right now is working on getting of the vent and that is exhausting for him and frustrating. But I think more frustrating is his inability to talk because of the trach. It breaks my heart to not be able to communicate well with him. Lord knows we have a lot to stay to one another. He is just a little stubborn with the situation, but I have faith that the physical therapist and respiratory therapist will get the job done. But in the meantime I have to admit it breaks my heart to see him feeling better, but struggling and getting frustrated. I know in time it will all come together and patience is the answer, but I feel we are so close to getting over this hump that how do you not race to the end. But once again I am reminded I do not control this situation, I am a cheerleader on the side. (I think I might be the best damn cheerleader, it must be all those years cheering for the Jayhawks) So we work and wait. Prayers and Patience that is what I am looking for these days. Tonight I sleep and I know tomorrow is another day that Bo will amaze me with his physical and mental strength, just at the end of the day I want him with me. I know, soon enough, but never fast enough.
Love to all
Christi
PS - I think the ICU Waiting room is getting the craziest people in it. I think I might be losing my mind, but I promise these people are characters. I feel bad saying that because they are in similar situations I am in, but the are (or I am) going nuts.

I just saw Bo and he is doing well. He is a little more rested than this morning after his morning workout. They are trying to work on his fluid levels, they believe that he is retaining fluid that is inhibiting, a little, his ability to breath. So they are working on him removing these fluids and then they will try again his breathing. Once he is off the ventilator for 48 hours we are out of ICU. It is time for Bo's game face to kick in...For all comments posted to help Bo push through this tough time, I will be sure to read to him. Thank you for all your support and love.
Christi and Addi