Monday, June 30, 2008

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

Sunday, June 29, 2008

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

Saturday, June 28, 2008

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

Friday, June 27, 2008

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.

Thursday, June 26, 2008

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

Wednesday, June 25, 2008

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

Tuesday, June 24, 2008

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

Monday, June 23, 2008

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

Sunday, June 22, 2008

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

Saturday, June 21, 2008

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

Friday, June 20, 2008

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)

Thursday, June 19, 2008

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

Wednesday, June 18, 2008

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

Tuesday, June 17, 2008

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

Monday, June 16, 2008

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

Sunday, June 15, 2008

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

Saturday, June 14, 2008

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

Friday, June 13, 2008

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

Thursday, June 12, 2008

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

Wednesday, June 11, 2008

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

Tuesday, June 10, 2008

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

Monday, June 09, 2008

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

Sunday, June 08, 2008

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

Saturday, June 07, 2008

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
Hello and sorry for the slow post. We got to spend time with Bo this morning when he was with the respiratory therapist. She is determined to get Bo moving and shaking off the ventilator, so let's pray that Tristin can do her magic. After Bo's first round he made it 45 minutes then was exhausted and has been sleeping ever since. Do not worry, she is going to work him again. Physical Therapy came by as well and they were able to get Bo sitting on the side of the bed, but we are going to put PT on the back burner for a while. (just so we can work on the trach)
Bo's other levels are working their way to the proper ranges, he is still a ways off and on lots of medicine. Right now his sodium levels are high so the are adding fluids to him to try and flush the sodium out. So lets just get the levels straighted out and breathing better.
By the way Bo's hand is looking better and better. It is so wrapped up that it hard to tell, but I think we are now seeing pink on the finger tips, so we might still have a two handed golfer. The wound unit is keeping an eye on it.
Thanks and I will write more later.
Christi
Everyone stay cool in the south.

Friday, June 06, 2008

Last post for the evening...things were pretty stable and status quo. Bo went through the GJ tube procedure without a problem and they got some food in him. PT came by today and checked out Bo's muscle and joints, things are looking pretty good considering he has been sick for over a week and just lying in bed. Tomorrow the hard work begins with Physical Therapy, they are going to "work him" Tomorrow they will also start turning the ventilator off some and getting Bo breathing on this own more. So little steps forward and not to many backwards.
Please continuing praying that Bo's body will continue healing itself, platelets increase, liver levels lower and kidneys cleaning those toxins out. Please pray that PT goes well and more importantly that Bo stays strong mentally and physically to get off the ventilator. Some people panic when they have to start breathing on their own because it is harder than before, but I am sure Bo will do well.
Love and Prayers
Christi and Addi
Hello -mid afternoon reporting here...Bo just made it through the GJ procedure and it appears without a hitch, wouldn't that be a surprise and a blessing. This will help greatly in getting nourishment in Bo to get him stronger and getting him out of here. The next step today is the Heprin, blood thinning to work on the clots and pray, pray, pray for my sanity and the doctors that Bo does not bleed again on his left side. (If that happens they will have another procedure to remove that fluid) So we can all hope that Bo will work with us again.
Patience is a big part of this process, so please be patient with us for I feel we are heading in the right direction, it just might take us a moment to get there.
I will let you know how the afternoon goes.
Love
Christi
Good Morning everyone...today is another day or gaining strength and pushing forward. Bo is going for his GJ procedure this morning around 10:00, who knows really when...this will take a couple of hours so I will have more to report after lunch. His numbers are looking better, platelets up, they still need to double about, kidney's are clearing more and the liver is getting into the proper numbers. We are still watching his fevers and temps, but right now things appear to be stable. They will start his Heprin this afternoon after the GJ tube procedure and this will hopefully help with the clots, we just hope his hand will not react the same. They do not think so, they will watch this closely.
Thank you to everyone sending emails with ideas for Addi, that is the goal this morning. I will be in touch with all soon.
Love
Christi

Thursday, June 05, 2008

Good evening everyone I hope you day went well. Ours was a good day, Bo moved to sitting in a chair for a little. Tomorrow morning they are going to put in the GJ tube, feeding tube, and that will remove all tubes from his mouth and nose. He seemed a little more aware today and a little more irritated, so that is our Bo coming back. He is doing really well, the doctors are just uncertain how long it will take Bo to get his breath back by himself. His diaphragm is a little worn out with all the procedures. So small steps and hopefully within the next week we will have the moment we have all been waiting for and out of ICU. Tonight we need to have an uneventful GJ tube procedure tomorrow morning, pray that his body keeps healing itself (kidneys heal themselves and platelet levels rise) please let his diaphragm keep working and start the process of getting off the ventilator. Tomorrow afternoon they are also going to give him Heparin (spelling) to help with the blood clots in his left chest, there is a chance this might cause bleeding again that they will have to clean out "manually" but they feel it is important to work on those clots. That will be later in the day.
Now I have a personal favor, I am looking in to bring Addi up to stay in our apartment, but I need to be with Bo a majority of the time. For anyone familiar with the Chapel Hill, Durham area, I am looking for half day summer camps, part-time sitters or ideas for her. Please feel free to email me or post on the blog ideas. I want to keep her entertained with friends, new and old, but I need to be with Bo as well. Thanks for the ideas and help.
Love
Christi
We have another step forward. Today they are working getting Bo's need for the ventilator lowered and he is working hard and doing well. He concentrates so hard that I never knew he could be so serious. I know most of it is his fuzzy head with all the drugs, but Bo does have a game face. He is also going to try and sit in a chair. This will probably wipe him out, but it should be a good change of pace and will allow his lungs to work in a more proper fashion. There is also the chance that he might eat something...it will be through a tube in his nose. I would say something is better than nothing, but in the instance I truly do not know. At least this will wake up his gut. I will hopefully see him after they move them, if they can. Thanks for the prayers and hope that the ventilator will be off soon.
Love
Christi
Sorry for the delay, computer issues this morning. I have only seen Bo for a second but he looked good. He was looking around and trying to focus on the TV. Today the goals are to move Bo's "Swan" line, where is is getting his antibiotics into a "pic" line. Once this is moved he will be able to start trying to get up. We also need his need for the ventilator to decrease. They have lowered the amount of assistance he is getting, but we still have a long road to go. Small steps...tomorrow they will put in his GJ tube in his stomach and he can start getting some nourishment, that will help him heal faster.
We have yet to get results for labs, those should come in "Duke" time around 12:00. We are waiting to see him again so I will post more later.
I did speak with the doctor about the fluid in his lungs that they attempted to remove last night and they feel like that is starting to look better, so small steps in the right direction.
Christi

Wednesday, June 04, 2008

So Sorry...we are finally out of surgery again. Once again Duke time, they took him back around 7:20 and we didn't get to see him until 11:00. But I can officially say we had our first uneventful procedure. They cleared out a lot of the fluid and put his trach in. It is more comfortable for Bo, but this does unable him to talk. So everyone when we can, feel free to call him and get your two cents in because he will not be able to respond back until the trach is out or plugged.
The doctor didn't really have to much to say other than hopefully tomorrow we can get some of the drugs to wear off and start trying on getting him up and moving a little bit more. They feel like he is moving on his way nicely and it might be time to think that we are getting over this hump. We are still not out of ICU, but we are getting closer. I have never been so proud of someone in the leaps and bounds that he made today. I could see him in his eyes and he even cut his eyes a couple of times. We are still working on getting his other organs to function more properly, but the tests now are done ever 12 hours instead of every hour. So that has to be progress for the lack of urgency. Small steps...
We are still watching his platelets and kidney function to get the potassium out again along with the other toxins. We are praying and praying for his hand to heal. It is wrapped in a splint and elevated to try and drain the extra fluid out. We are also praying for his liver to calm down and and the infection to clear itself up. They will still have to do another procedure to put a feeding tube in, but that should be in a couple of days.
But tonight along with praying for Bo to heal, please pray for two wonderful and amazing men that have helped me and my family through this incredible process. Bob nicknamed us the "Mod Squad", please pray for Bob and his wife, I will have to get her name tomorrow. Bob Fuller has been in ICU since January with his wife. They are trying to get her strong enough for a heart transplant and every day he comes in to be with her. He always has an arm around me with a smile on his face telling me to be cautiously optimistic and try to take each situation one problem at a time. And then there is Joe Edwards and his wife Marilyn. Marilyn was admitted two weeks exactly before Bo and she also had a double lung transplant. Joe not knowing me from Adam or Eve told me his story (they were on ECMO as well) and made me feel sane with everything that I was going through. He opened his heart and soul and we shared our emotions of everything and our frustrations. I selfishly talked most of the time about my frustrations and he kept quiet with me. Now able to step back and realize he must of wanted to strangle me because he had fought for so much longer. I am happy to say today Marilyn was move to "step-down" out of ICU and is starting the fight of using her lungs. These two men have touched my soul in a way that I hope and know I will never forget. I love them and their families and we will have that picnic soon to celebrate life.
I hope to post wonderful news tomorrow because I begin to feel like the sun a breaking through the clouds and my Bo is fighting back to me.
Love
Christi and Sweet Addi girl
Hello everyone sorry for the delay but I always forget that we are running on Duke time. Bo has not gone to surgery yet...hopefully soon. Sorry I should have said something earlier, but I kept thinking they were going to take him soon. I also have been spending as much time that I can with him while he is awake. He is really excited that we were paid last week, he nods his head when I ask him if he sees crazy stuff, (he is truly drugged out) He always wants to look at the picture of Addi. He misses his Bonnie Jane, and everyone at work. He is moving his eyebrows a lot when I tell him about all the well wishes and prayers being said, I made sure to tell him about everyone. He cannot wait to see and talk to everyone. Not much to report right now, but I will be sure to let everyone know when he goes in for surgery and when he comes out.
Please pray that we can have one uneventful surgery and not let me worry. Wait until everyone sees my worry lines.
Christi
Good Morning everyone - We are still making our baby steps. Bo had a restful evening we appear to be taking baby steps in the right direction. His platelets are up a little, still a long way to go, but baby steps in the right direction. His kidneys appear to be clearing a little better so they are waiting on the dialysis and are hoping time will allow them to jump start in time. His fever is still high, but appears to be stable with the cooling blanket so they are stopping with the Tylenol and hopefully that will rest his liver and allow it to function better. Small steps...we are meeting with the wound people today about Bo's hand. There still isn't much that they can do, but they think it might be getting better. He might loose a few fingers instead of the entire hand, this one is just a wait and see game. The first test for HIT came back negative, they are waiting on other tests to confirm. With this being said, they still do not have an explanation on why his hand reacted this way, but time well hopefully heal it.
Bo is still going into surgery again today to put a trach in. This will hopefully help with infection and for his prolonged need for the ventilator, when they are putting this in they might put a feeding tube in as well. They will decide that later. They are also going to clean out his left side a little bit more to get some fluid out and hopefully this will help the overall lung function. We can only pray this is the last time Bo goes to the OR Room, Lord knows every time I think I am at my limit, we go back.
They are trying to wake him up this morning, just to knock him out again for surgery, but I did get to talk to him some. He blinked a couple times to questions so that was great. He blinked to say his hand hurt so that breaks my heart, but I think pain might be a good sign he still has feeling in it. He also blinked to say that he loved Addi and his Mom, when I asked about me he was dumbfounded on said nothing, so we all know Bo is still there neurologically. Man I love him.
Love Christi
I will post more when he goes into surgery again, which will not be until 2:45 and will take a couple of hours. Keep praying for one smooth procedure.

Tuesday, June 03, 2008

Final post for today, the doctor has yet to make it back to Bo tonight, but I am sure he will be there later. Special prayer should be said for Dr. Davis's family and the sacrifices they make to heal others in their times of need. Bo had a pretty calm day today, throughout the day they worked on his fever, it is still high but hopefully coming down soon. They say it isn't uncommon for fevers to happen and considering what Bo has been through, not surprising. This is not good either, but they are running labs on him which we should have to results tomorrow sometime and hopefully will be able to treat. They gave him some medicine for blood clots that we in his shoulder and when releasing the medicine fluid came out. We can only hope and pray that this will take care of the fluid in Bo's left lung and he will not have to endure another surgery. We will know more tomorrow, of course.
Our obstacles for tomorrow are that Bo's platelet count is really low, it didn't go down today, but we really need to get those numbers up. Bo's kidneys have also taken a toll and are not performing as well as they would like, but they cannot put him on dialysis until they figure out what is the matter with his hand. They ran a HIT test to see if he is having a rare "allergic" reaction to the Heperin, a blood thinning medicine. Once they figure that out then they will know a better more aggressive way to treat his kidneys without hopefully loosing his hand. His hand is still really sick, but they are waiting for the test results to see if they can do anything to help it out. In the grand scheme of things the hand isn't as important than his ability to breathe with the new lungs. I know we will all love him no matter what. Also tomorrow Bo is undergoing the procedure of putting a trach in and taking out the breathing tube from his mouth. He is still requiring a ventilator that is the reason for the trach and they will also put a feeding tube as well. This isn't something that is permanent, but necessary for right now.
Everyone is always warning us that this will be an up and down procedure full of bumps, but I sure do pray for the day I do not take up a page of problems. For those still reading our recap of goals for tomorrow is
1) Platelet count needs to go up, this will allow more flexibility in treating Bo and how he reacts to drugs needed
2) Kidney Function - Bo needs to be clearing more of the toxins
3) An uneventful Trach and feeding tube procedure - Plus pray that they do not need to open him up to get the fluid out of his left lung
4) His hand - Please let him not have HIT
Thank you everyone for their love and concern, I sure hope Bo doesn't drag this out any longer, I sure would hate to loose anyone of you out there. I promise drinks are on me when this is done, we at least a coke
Love Christi
5) Also that I can get my Addi girl up here all the time...
We just talked with the doctor and we are still working on small steps. Bo's temperature is creeping back up so they are running cultures to see if he has an infection or what might be causing this, I sure wish Bo would make this a little easier on my and the doctors, but this is Bo we are talking about here. Part of the doctors frustrations is that they have very little wiggle room with the medicines that they can give them. Bo still has fluid around his left lung that they are going to try and treat through tubes and clotting medicines, Bo does not like the blood thinners that is what might be giving his hands the reaction that they are having, we are waiting on those results. He might have another operation is remove that fluid, but at this time we will cross that bridge when we come to it. They are going to put him back on dialysis to see if that will help with the infections and build up in fluids, pray that this is the easy solution.
Today will be a big waiting day, so I apologize if I do not get updates until later. No news is good news always remember that and small steps forward is all we are looking for, small steps.
Love
Christi and my sweetest Addi girl
This morning post, Christi, but you will probably know by the typos and grammatical errors, oh well. We are still waiting to hear from the doctors this morning. Rumor has it he just made it back there so hopefully soon. I did get to go back there for a moment and his temperature is better. They have taken the cool blankets and ice packs away and are just working on it with Tylenol. He will probably be put back on dialysis today. (They clarified for me that him peeing isn't good enough, he needs to be removing the toxins as well) Having something come out is good, but he needs to remove more of the toxins and medicines they have been giving him, hence the extra help. They feel he is young, so hopefully things will not be permanent. There is no word on his hand yet, it appears that he is having a reaction to some of the medicines they give during surgery. This is call HIT and they are being cautious with the medicines they are giving him to not make it worse.
As soon as I speak with the doctors I will clarify everything and learn how to spell. Thank you Thank You and Thank you for the prayers. We are taking baby steps everyday, but we are still a good distance from getting him home. But I thank GOD we are not where we were two days ago.
I will write more soon
Christi
Thank you and love to all

Monday, June 02, 2008

Hello all Christi here....sorry for the delay posting, but I wanted to talk with the doctors before we posted again. We have great news we are currently off ECMO, let's pray that we never have to use that again! This is huge progress, but we are very far from in the clear. But it is nice to meet other nurses other than the ones that have won a ton of awards for their ability to handle the critical patients. We also might have the bleeding in his chest under control. They are performing chest x-rays all the time to watch fluid in his lungs, but this fluid is different than the previous fluid that was in his lungs, this is on the outside.
Bo is doing well, but we have come across our next set of complications. He is running an extremely high fever right now that they are working on controlling with medicine, ice and cooling wraps. We have been unable to test his neurological functions, so please let those come through fine. He also needs to work on his need for oxygen. Currently they are still assisting his still, but they did state that they would like to take baby steps with his lungs. But also extremely important Bo has an "infection" in his right hand that has currently lost necessary blood flow to his hand. If they cannot correct this, Bo will loose his right hand. I am extremely worried about this for his mental state when he comes through. We all know how much Bo loves to golf. Nothing will change the way I feel about Bo, but please pray that this can correct itself in the next 24 hours. I can honestly say this caught me completely off guard, but compared where we were this time last night, I will take Bo breathing on his own with assistance to a right hand any day.
I guess to summarize please pray for Bo's lungs to get stronger and work more independently, please pray for his fever to come down, pray for his neurological function to be normal and please pray for his right hand to heal. I know I am asking for a lot of prayers, but I feel if we keep taking this step by step progress can be made.
Love to all
Christi
Please kiss Addi for me!
First report of the day:

Let me preface this report by saying this is the best information as Christi and Jo understand it from the doctors. There is so much information being given to them that processing and remember all the contingencies can be confusing. So, Bo’s blood pressure is beginning to stabilized somewhat. It is still fluctuating but not at the critically low levels like last night. He has begun to make urine and is not on dialysis. There is some fluid below the lung on the left side that they hope will drain naturally. This is not fluid in the lung but beneath it.

From what we gather, they will attempt to wean him off the ECMO machine sometime today. This would be a very positive step in the right direction so please continue to pray for this.

Bo is fighting and your prayers are giving him strength.

We are posting the information as we get it. Bear with us.

Brian

Sunday, June 01, 2008

Another late post, but necessary for your prayers. While we felt good about Bo coming out of the 2nd transplant today, his blood pressure remains very low tonight. We need the blood pressure to come up so they may perform a perfusion test on his lungs. Normally this would have happened by now to test to see how the new lungs are working, but due to the low blood pressure the doctors have not been able to do this yet. Please pray this rises. Additionally, we need him to produce urine. After surgery the doctors removed him from dialysis for a short time but placed him back on this evening. Once they see good urine flow, then we can move away from dialysis.

Bo is fighting and with your prayers we will conquer this. Your support, thoughts, and comments have meant so much to the family so please continue to build their strength. I see first hand how your comments nourish the entire family’s heart so please keep the support coming!

We’ll post any updates as they are available.

Brian
Hello to All, Christi here. We made it through the second lung transplant! Bo still is extremely critical, but he did not start off with as much complications this time as last time. This time the fluid build up wasn't as dramatic and the bleeding the combated before surgery started. He is still on the ECMO machine, but they moved the canules to his neck and legs and closed his chest which will be one less surgery he will have to withstand. We need to pray that they can get his blood pressure under control again from the surgery and can get him off the ECMO machine as soon as possible. To rest assure that we made the right decision to send him into surgery again, the doctor said his left lung was essentially dying, there is a word for it but I forget and that was and is causing his body to inflame. So we need to work on getting the inflammation out as well as everything else. I did get to see him for a moment and he looks as handsome as ever and will have plenty of war wounds to impress the ladies.
I do want to apologize for the people that didn't sleep last night. They told me we would have news around midnight and they did not call me until 6:00 in the morning. Try to get some rest and thank you to everyone that are saying prayers and prayed their heart out at church. God is listening, we now just need a little more strength for Bo to recover from his 3rd surgery.
Thank you to everyone and pray pray pray.
Christi
Please also pray for the families that have lost their loved ones that donated their precious organs to others.
Good Morning. It’s time to send your prayers up in earnest this Sunday morning as Bo went into surgery just a little while ago for his second lung transplant. Word came in during the night that the donating lungs were a match.

The procedure will take approximately 6-7 hours. Progress will be posted as available.

Pray that these lungs are the solution!

Brian