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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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