Saturday, May 31, 2008

Hello Christi - I apologize for the late post but we got news that the surgeons are on their way to look at another pair of lungs. This has the potential to be a dry run, but lets all hope and pray this is the path God wants us to walk, maybe run down. I will not receive word if it is a go until late tonight, after 12:00 sometime, but I will be sure to post or have someone do it for me. Please pray for the doctors to have the wisdom, Bo to have the strength and all of us to have the faith in believing in miracles.
On another note, Bo is doing well, he is even a little stronger today, just still not moving as fast as everyone wants. So in our pinky swear methods we are trying to help him heal the best we can so we can get him typing to everyone.
Take care and I will post more later
Love to All
And to all on this journey for these past couple years we can officially tell Bo tomorrow that he is cancer free tomorrow on his 2 year anniversary! Congrats!

Hello again, Christi here. One of my favorite pictures of my heart. Sorry about the crazy emotional post last night, but in my defense I did just get another shock of my life. Not quite sure how many more of these I can handle, but I guess I will find out and take them one by one. I hate to tell them I am not going anywhere so keep trying.
The Plan right now is hold steady and stable, which Bo is doing, and wait for another lung transplant. In the meantime of waiting they are still trying to correct the fluid in Bo's lungs, they just see this as a faster and better solution. I have to go back to trusting someone so God and the doctors would probably be a good place to start.
Sorry there isn't really anything to say today, which I appreciate. Thank you to everyone taking care of me, my house, my dogs and of course Addi. I love her so much and everyday Bo and I talk about her fishing with Daddy real soon.
Thanks and post soon

Friday, May 30, 2008

Hello Christi again. I apologize for posting so late. They finished the procedure late tonight and it didn't do the miracle we all wanted. Bo is still stable but the doctors would like the fluid level in the lungs to be decreasing quicker. They are going to watch him of course all night very cautiously in hopes that after some rest we might get our miracle and the fluid levels will decrease at the rate and volume they want. (I think we are almost wanting him to getting better at the same pace, but trust me I want him a little bit faster than the doctors do, but they must have a sweet spot for him)
What I am going to say now sounds scary and will be a complete shock (for that is where I am) but they are also going to re list him for another lung transplant (I think I am going to vomit- but we can all do this, stay strong everyone and pray your hardest tonight and tomorrow) Crazy I know, unheard of I know, but it lungs come forward to him and the doctors think this is the best option, I will be in the surgery room waiting and updating you all. This is an option because I think Bo other organs are still doing so well that they have pinpointed the problem to the lungs and the damage that might have occurred with the swelling, please bare with me if my explanation is a little off. All I heard the doctor say is that we are going to re list him and then the rest turned to Charlie Brown (wawawawa) shock! But I am turning this over to God and trust that this is the miracle we all wanted, I trust that Bo can withstand this, I trust the doctors and I trust you all to help guide me, Addi and Bo through this journey. Please keep believing in him and my entire family because no one is giving up and I made the doctors pinky swear.
We can all do this stay strong, sorry if I do not talk personally with everyone, but I am on an edge and I am standing strong, but I am just not sure where my limits might be.
I love you all,
Everyone Kiss my Girl because my heart is breaking because she is enduring this with all of us.
I hope to post soon
Christi, Addi and Bo
Here’s what we have for now:

The doctors conferred this afternoon and have decided to try a procedure late today to help his body drain the fluid on the lungs. They have been troubleshooting this and feel this procedure will help his body along. Overall things are the same. Continue to pray that indeed this will help drain the fluid.

You can continue to post on this entry or the one below and I’ll print them both out for Bo’s ears. Your messages and prayers will give him strength. You know Bo is a fighter so let’s give him some encouragement.

Just heard from Christi. In short, there is no change. The doctors spent about an hour with Bo this morning and everything is still as it was last night. As they have told us all along, it’s a matter of waiting. He is still on the ECMO machine and resting so the lungs will reduce the fluid buildup.

One another note, I hope to have Christi up and running on a laptop this weekend so she can continue to post as well. While I’m there, I thought I would deliver some messages from the blog for her to read to Bo if ICU will allow it. Even though he is sedated, I believe reading these to him would help him fight. So, if you have a message for Bo, please leave a comment. I’ll print them off tomorrow and take them with me.

Updates will still come throughout the weekend so stay tuned and keep praying.

Good morning everyone. I’m sure many of you are anxious for any news. We are waiting on the first report from Christi and the doctors. Christi arrived at the hospital this morning and we will post as soon as we know something. Sorry for the delay as there just hasn’t been any more information since Christi’s post last evening.


Thursday, May 29, 2008

Hello everyone Christi here. I nice gentleman is letting me use his computer for a moment to type a little, please pray for his wife as well, Marilyn Edwards. She is another ray of hope. She was on an ECMO machine earlier and has since been removed and breathing, but has suffered other complications, but like many people here and like the Johnson's she is fighting to straighten everything out. Her husband, Joe, has been so patient with me explaining the process he just went through and getting everything down pat. So thank you to their family.
There isn't any major changes, they are getting Bo's Potassium levels under control using machines and actually I was just interpreted by Lisa the educational nurse and she informed me that Bo's urine is back going again and the Potassium levels have lowered to an acceptable high level. These levels with continuously fluctuate so I have decided to stop worry about numbers and look at the big picture so we are.
I will call with more news when I get some. Thank you Thank you Thank you for praying and putting nice comments. I cannot tell you how much that means to me and all my family members. We are going to get through this, it might take all of us supporting each other, but we will make it.
Love Christi
PS Thank you to everyone that is distracting Addi, I love you all. (I think I love Bo more, but you know that!)
Here’s what we have so far today. Bo is still in ICU and is still sedated. His potassium levels are high which is causing his urine flow to slow. The doctors are looking at different alternates to correct it. Christi was in to see him early this morning, but hasn’t been in since and is waiting for an update from the surgeons.

This is all we have as of now. As I get news from Christi (and we are in contact frequently) I’ll post it.

Continue to pray!


Wednesday, May 28, 2008

Ok – here’s what we have as of 10:20 p.m. this evening.

Things are pretty much the same. Bo remains in ICU sedated allowing time to pass for the healing process of the new lungs. They remain swollen and fluid filled which is the cause for the immediate concern. He is on an ECMO machine in ICU. You can read about this machine at His ECMO machine is the VV type in case you are curious.

Christi likes to put things in simple terms so basically we need three major things to happen:
1. Fewer blood transfusions -to eliminate antibodies coming into the body.
2. Continued urine output -to make sure he doesn’t go on dialysis.
3. Fewer bronchoscopies ( -which indicates the body is ridding the fluid on the lungs naturally.

I sense the doctors are cautiously optimistic about his current status. They would like to see him come off the ECMO as soon as he can so the lungs can start doing the work on their own. Obviously the fluid must come down first.

Since Bo is now a regular ICU patient and not a post-op patient there won’t be another update from the staff at Duke until tomorrow morning. Updates come from 9 a.m. to 9 p.m. while in ICU.

So everyone get some rest tonight and the updates will continue tomorrow as information is available. The entire family expresses their gratitude for the well wishes and notes and especially appreciates the extra prayers for Bo.

Many questions about cards, flowers, etc…..

Because Bo is in ICU most well wish items are not allowed. Since we do not know when he will be placed in a room, it’s best not to send items to the hospital. Christi has asked that cards and such be directed to their home address for the time being.

Bo continues to rest while you continue to pray!

Ok- some more information and clarification from Christi:

The doctors met with the family a little while ago to give an update. In short Bo’s new lungs are swollen with fluid as a result from the transplant. It is not an infection but carries similar characteristics. Basically fluid buildup can happen once blood restored to the newly inserted organ. The doctors are saying it could be days or weeks before the swelling goes down. The best remedy is to give the lungs a chance to rest and heal. He will remain sedated in ICU under careful watch.

There have been other cases with the same problem. In fact the family just met a gentleman at Duke that had the same complication with his lung transplant 4 months ago. So while this is very serious, the doctors are optimistic.

Please continue to pray for Bo and the doctors. Any developments will be posted.

I realize many of you are anxious for some news. At the moment, they are waiting for a visit from the nurse for an update. The doctors will be later as well. Christi was able to see Bo briefly around 6 a.m. but since then, it’s been a waiting process.

More to news come as we get it.

Bo is out of surgery and in ICU at 4:30 a.m. As we all knew going into this surgery, this is a very complicated procedure and there is no “typical” lung transplant. There have been some complications that have surfaced during the operation. Apparently Bo has some sort of infection resident in his body causing a mass amount of fluid to be produced. This began to happen after the left lung was placed in and work began on the right lung. Needless to say the doctors weren’t expecting this. With no visible or test detected signs of an infection in his body, they are confused as to source of the infection and thereby not 100% sure what treatment to combat it. With the mass build up of fluid his body and in the lungs, they have inserted a device that will help drain the fluid so his body can function. This is a very critical time for Bo. Please continue to pray. The next 12-24 hours are extremely critical.

Because he is in ICU there are no visitors allowed. Please keep this in mind. We know there will be at least one more procedure to remove the device that was implanted to drain the fluid. News will be posted here as I get it from Christi.

More to come.


Tuesday, May 27, 2008

First update. Christi is receiving calls regularly from the doctors in the operating room. The left lung is out and there is not any sign of cancer outside of the lung. This is good news! If you recall this is the same lung that had collapsed late last year. The next step will be for the new lung to be inserted on the left side, watch to be sure all is functioning, then move onto the right lung.

More to come. Keep praying.

The day has come. Bo received a call from Duke this morning at approximately 11 a.m. instructing him to come in for a potential match. We’ve been through this once before so it was much easier getting the call. After waiting the entire afternoon, the news finally came just before 6 p.m. that the donating lungs were a match and the surgery was a go. Bo was prepped and went into surgery at 7:53 p.m. this evening. From the information we have received the surgery will take 6-8 hours. The immediate family are on their way to Duke. Tracia is watching Addi at home.

If you are reading this, please say a prayer for Bo. We’ll post updates as they come in.

Brian Williams

Wednesday, May 21, 2008

Sorry more to say...Please read below about Baby Connor...Today was Addi's last day of school and I have to say I was sad to see how big she is now and how grown up she is acting. (Athough we are challenging Mommy and her rules) But I do have to say I have a sweet little girl, I will wait a couple years before I call her lady.
In the pictures below are Miss Meg the director of Addi's Preschool, Miss Michelle one of Addi's Teachers, Miss Kim Addi's other teacher and two of Addi's "Best Friends" Jenna and Carly", everyone else ran for the doors on the last day of school. She loved it there and cannot wait to come back next year!
Congratulations Addi!
Yeah! Addi has a new friend. I am happy to say with William Connor Ham was born this morning. Candace and Walker sure do make a cute baby! I cannot wait to see him tonight! Addi was on the computer all morning trying to figure out how he came out of Miss Candace's tummy and why he was yelling so much. Please take a look at some adorable pictures at
Thanks and take care
Christi and Addi
PS - Erin take a look at those legs, does that remind you of what Ryan looked like when she came out breech!

Monday, May 19, 2008

Happy Monday to everyone. I had a great weekend. I played golf and just hung out with Addi and Christi.

We had a wonderful gesture made from two of our neighbors. I will not say their names for privacy sake. The husbands brother died unexpectedly this weekend. He is in his early 40's and was still on a ventilator but was brain dead. They called us and said they wanted me to have his lungs. We were really touched. In the midst of such a tragedy, the family thought about our family. Christi and I really do not know what to say. I am not sure that anything will come of this, but it really makes your heart remember how good people are. I will never be able to do this story justice while typing on the blog, but just know that it was incredible call. We are praying for the family and their loss.

Wednesday, May 14, 2008

Hello (Christi here) Today through my "Mother" eyes I am very proud of our little girl, but everyone else might be a little disappointed. Addi has officially learned to say "Fire Truck" appropriately. I tried not to let her say it in public, but sometimes it could not be helped. (In case you were wondering, she always put two "f's" in Fire Truck...Fire then the "F' and then the "uck") Not good nor appropriate...but thank god!
Our little one is growing like a weed and taking on all sports, with much happiness from her Daddy. She loves Soccer, Football and always cheers for Basketball. But I do say most of all she likes the cheerleaders at the games. Anything to yell yeah for and "ahhh he missed it"
Other than that nothing new to report. We are finishing school, ready for the pool, practicing skipping, telling Mom "You are a crazy driver" and practicing golf. She is becoming mini-Bo every day...oh and we are waiting for the phone to ring...still waiting and enjoying our time together.
Christi and Addi

Monday, May 12, 2008

I hope everyone had a great Mother's Day. The Johnson Family had a busy weekend. Christi and Addi went over to Lena and Phil's on Saturday morning to help out and watch the kids as Lena had somethings to do, then went to a Tea Party for my Mom with Tracia and Caroline. I played golf with Phil in a tournament and we came in second. We came home and Addi had a nap, then we took her with Aunt Tracia to a Japanese steak house where they prepare the food right at the table. She liked it ok, but was a little bit overwhelmed during parts of it. Sunday we went to church, hit Dunkin Doughnuts since Addi was such a good girl. We also had a big storm here in the afternoon with hail and tornado warnings. We then went to see my Mom and called it a night.

We are currently still waiting on the call, but just living as normally as possible. This week is our annual FIG trip to Napa Valley, and I can't go. It is a little sad, I have never missed an FIG trip. Next year we are taking everyone to the Dominican Republic, so I hope I will be back on track. I think we will have about 160 people in Napa, and I will miss them all. I really do love my job and all the people associated with it. Someone has to stay back and watch the ship!

Just a note - in December I weighed 149 pounds and now I am back up to 181. I have been eating everything in site. I really feel that the pulmonary rehab has helped me a lot.

Monday, May 05, 2008

Hello all! (Christi) Do know that no news is also good news. We have been packing in the fun while we can, with Addi of course. We had a wonderful weekend. Friday night we got to have dinner with family and friends. For the first time we gave the little ones a table of their own, in a restaurant. I know we are nuts to put 2 four year olds (Peyton and Jacob) and 1 three year old (Logan) and 2 two years olds (Patterson and Addi) at a table together, but they did great. They were funny to watch interact and I have to say quieter than the stories that were being told by the adults.
Then Saturday we went to Town Day in Davidson. Addi got to see a bunch of her friends, play games, ride a little train and obsess over the elementary school Jump Rope team. She tried to jump with them, quite entertaining. Then lunch with Uncle Lee and Mr. B and then Daddy went to golf with Mr. Bailey as well. Somehow golf took from 1:00 until 9:00, not quite sure how they played in the dark, but I am just glad Dad got some men time and on the golf course. The bug is starting to bite him again!
Sunday Addi and went to church, someone around here needs to pray for the poor souls that hang out with Daddy until 9:00 and not call home. Bo went to the Wachovia cup, then a Picnic at school and ended the night with Grams and Papa with no pants on. Talk about a good weekend. Bo is doing well, Addi and I are great, but I do have to say that everyone lately sure is answering the phone differently when we call. Sometimes we might just call to chat.
Take care
Christi and Addi