Thursday, July 31, 2008

Hello everyone - I hope that everyone is doing well. We are running the same here. I am beginning to think I may not be able to post everyday. I might begin to post when our exciting (good) news happens. We will see, I might miss talking and pretending I have a captive audience. Bo spent most of the day resting learning more and more exercises for his diaphragm and the muscles that assist the diaphragm. He is loving PT right now...whatever it takes to get out of the hospital.
On another note, I truly know Addi is her Daddy's daughter. She is "selling" it all the time now. Last night she didn't want to go to bed when it was dark outside, so we started stalling. Normally Mommy doesn't humor her to much, but she was trying to hard. First we had to read one more story, then we had to do one more dance, then turn out all the lights, then "Mommy will you lay down with me?" (My first mistake) Then we had to say night-night to all our animal friends in the bed with us...then the cherry on top. "Mommy you want to snuggle?" Needless to say I think I feel asleep first, but I had the best little arms around me. Sometimes I wonder who is taking care of who anymore?
Rest up, because we are going to bed again soon
Love
Christi, Addi and Bo

Wednesday, July 30, 2008

Good Evening Everyone - Today was about the same as yesterday. Bo was more comfortable without the vent and got some rest today. Let's just hope that with continue throughout the night. The night is always the hardest, less distractions from concentrating on your breathing so it almost becomes and obsession and sometimes not in a good way. I missed the doctors once again so hopefully tomorrow morning we can all meet up.
On another note, please mark your calendars for September 21st, 2008 from 11-2. Touch a Truck 2008. Please see the following link for details of this years event.
http://www.lkntouchatruck.com/EventDetails/tabid/449/Default.aspx
This event was a huge success last year, so we are excited for this years new great cars, silent auction items and enhancements. A huge thank you goes out to the girls picking up my slack...Tracy, Rachel, Robin, Mindy, Alecia, Lena and Candace - Thanks again
Love to all
Christi, Bo and Addi

Tuesday, July 29, 2008

Good Evening Friends - I unfortunately do not have really anything new to post tonight. This morning they did another biopsy and we will get the results of that back soon. From a visual aspect another doctor thinks Bo's lungs are looking good. He stated that the sluggishness in Bo's diaphragm could be the main culprit to the accumulation of CO2 in Bo's lungs after an extended period of time. I didn't get to speak with the doctor personally (as planned) but I did get to speak with the transplant coordinator and she reiterated what I just mentioned. After speaking with numerous people yesterday, a force of people came forward to help in the rehab of Bo's diaphragm. So Bo is going to work, work and work to get that stronger this next couple of weeks. They are hopefully going to start weaning Bo back off the vent tomorrow. I pray for Bo's strength to endure this yet another time. There is almost nothing harder for him to do and the fact that he has done this so many times is a testament to his strength and fight to live. I just wish sometimes he could get a break and it would be easier. Tomorrow I will sit with him and encourage all day long. We have a mantra we say to help calm our nerves "I Love Addi, I Love Addi, I Love Addi" It always seems to help.
I did get a great visit today. Mr. Fuller came to check on me and some other friends, and he couldn't have come at a better time. I was started to get frustrated with our vicious circle and there was that red St. Louis hat with arms wide open. It is selfish how quickly and easily I feel into them. I hope to have the strength and courage that he has. The Fuller family has been through so much and yet again unselfishly they come to the hospital to check on us still fighting. We talk about our adversities for the day and get the honest reminder that they would give about anything to be there too.
Everyone rest up because "We Love Addi" and we will keep fighting.
Love
Christi, Addi and Bo
PS - I am trying to watch the special, The Last Lecture, Wow what a hard one to get through. It hits a little close to home...what an amazing family.

Monday, July 28, 2008

Good Evening Everyone - I hope that everyone is doing well and staying patient. We are working on getting stronger and stronger. Today we ran the same of working on getting our diaphragm stronger. The best thing for that is to sit on a trach trial without the vent. And then they are putting Bo back on the vent at night to rest himself. This morning we could only briefly talk with the doctors, so tomorrow Dr. Steele is going to come by and talk with us about more pulmonary exercises we can do and maybe tweaking our path to be the most beneficial for Bo getting out of the hospital. It is my understanding that we are waiting on a nerve function to heal itself and to work the diaphragm more efficiently. So hopefully tomorrow I will have more to report and our path for the next week.
Take care and rest up
Love
Christi, Addi and Bo

Sunday, July 27, 2008

What a fun day today...Bo and I got to hang out all day thanks to the Graham family letting Addi play with them this weekend. (Thank You!) Bo and I got him all cleaned up for Monday's doctor visit to set the game plan for the week. Then we played Battleship working on Bo's fine motor skills, he let me win. We walked, walked and walked all day long. We are working on Bo taking deeper breathes to pull the CO2 out. So lets focus on getting the diaphragm stronger, Bo relaxing more (no panting) and walking our way out of the hospital.
Take care
Christi, Addi, and Bo

Saturday, July 26, 2008

Good Evening Friends - Today we kidnapped Bo and brought him back down to the 3rd floor with our "people" Bo liked his stay on the 7th floor just fine, but we wanted to be with the people that know Bo and his path to recovery. So we kidnapped him, I did promise him next time I would kidnap him from the hospital completely. Other than the kidnapping, today was pretty uneventful. (As I have said before, I will take stable and uneventful any day) We rested, we walked, we talked and we watched movies. Tomorrow we will do the same. Then Monday we regroup and find the next plan of attack.
I hope everyone has a restful weekend.
Love
Christi, Bo and Addi

Friday, July 25, 2008

Good Evening Friends - I hope that you all doing well. Today Bo was a little more frustrated than yesterday, but that is completely understandable. He really wants to go home and to be with all you, talk about work and play with Addi. I think he might of tried to do a little to much yesterday, because today he was a little more tired and breathing a little harder. So we rest. It is hard to know how hard to push because you want to always challenge yourself, but not set yourself back to far.
They are looking more into Bo's diaphragm issue. Nothing really new to report, but wanted to throw that one out there to pray for. If we can get his diaphragm working more efficiently then that should help with lowering the CO2 levels. So we pray.
Bo is resting tonight in a different ICU, the 7th floor. This is just a temporary change not due to anything to do with Bo, more to do with the need for bed space on the 3rd floor ICU. The 3rd floor is the most advanced technology wise. Bo is just using the vent now, but since these doctors know him and they want to make sure he get the best care possible (I think they want Bo to be their pride and joy) They will get him back to his room as soon as possible. Unfortunately on the flip side of this, that means there is too many patients critically ill right now. So please take a moment to think about everyone on the 3rd floor ICU, pray for their family and pray for the amazing doctors and nurses. (It goes to show we are getting the best treatment possible)
Take care and rest up
Christi, Addi and Bo

Thursday, July 24, 2008

Hello All - Bo had a good day today. The nurses were so sweet with him and got him outside. We are really focusing on life outside the hospital. I think we (I am certainly guilty of this as well) focus so much on the numbers and the next problems to take care of that sometimes it is just too much. We cannot control most of it and we have to trust the doctors to take care of the rest. We are reminding ourselves that it is in Duke and God's hands. (Most certainly not in that order, hahahaha)
Bo was off the vent most of the day and he is resting on it tonight and probably for the next couple of nights that will be the routine. Then we will try next week to get out of ICU again. They are looking into his diaphragm again to see if there is anything they can do to help with the sluggishness that is occurring on the right side. So we wait, get stronger and attack again next week.
Love to all
Christi, Addi and Bo

Wednesday, July 23, 2008

Good Evening Everyone - Well as I mentioned before Bo is back in ICU and resting well. He has been on the vent since last night and resting well. He gas levels are pretty much back to normal, his fluid levels are getting better and his hand is healing remarkably well. So we are on a calm path tomorrow. The are contemplating moving Bo to a different floor that allows a few rooms to have ventilators in them so is isn't such a culture shock to move him from ICU to "step-down". I think that would help his greatly. You get incredible care by the nurses (one on one attention) while you are in ICU, that when you go to the regular floor you almost feel like you are alone and ignored (which is not true, in Bo's eyes it just feels like it) So switching him to this other floor will allow him to adjust to the non-one on one attention and then slowing wean him off the vent with the less attention. Small steps - but always in the right direction. Thank you all for posting the encouraging comments to Bo. I just never want him "comfortable" in the hospital. We all need him so much!
Love to all
Christi, Addi and Bo
Good Morning to Everyone - sorry for the slow post. We had another frustrating night. Bo is back in ICU and on the vent. His CO2 levels were on the rise and they wanted to be cautious with Bo. I haven't been able to talk with the doctors yet, but hopefully this afternoon I can catch up with them to find out what the next game plan is going to be. Bo is certainly frustrated, as we all are, so if anyone has the time to send words of encouragement to Bo I think he would benefit from them. I am afraid he is getting to comfortable with this hospital and might need to know that we all need him in the real world...
Thanks and I will post again later
Love
Christi, Addi and Bo

Monday, July 21, 2008

Good Evening Everyone. Bo had a nice and semi quiet evening on step down. Sleep at last! He didn't really feel that great today. They found that they have keep Bo a little too "dry" They really try to keep fluids out of Bo's lungs, so they give him medicine to help keep him "dry" Well if it isn't one things it is another and now Bo needs fluids to help him out. A very smart man told me to ride the waves, not to get to upset with the downward movements and stay a little guarded with with the highs. So they keep watching his CO2 levels with all this going on and hopefully we can stay in step-down.
Please pray for Bo's levels to even out and for his CO2 levels to stay within a safe range...out of ICU.
Take care
Christi, Bo and Addi

Sunday, July 20, 2008

Hello and what a weekend! Bo today asked to have his staples out (they went clear across his chest) and they said yes. So we cleaned him up the best we could...shave, hair, nails the works and staples out. Then they came back and said since we were on such a roll, why don't we move on out of ICU! So Bo is once again on step down, hopefully for good this time! He is doing well, just exhausted because we are trying to get his days and nights straighted out again. So I am going to stay with him tonight and tomorrow will hopefully be another great day getting our walking on and getting out of the hospital period!
Take care
Christi, Addi and Again, Step Down Bo

Saturday, July 19, 2008

Hello to all and sorry about not posting last night. Between talking with Mom about the Addi's Cure Event last night, which appears to be a huge success! (I cannot wait to see pictures) and watching movies with Bo, I forgot the computer at the hospital. Sorry!
We had a good relaxing day, Bo is on day 3 without the vent so hopefully on Monday we will be moving out of ICU, this time for good. I tease that Bo likes to do things twice, so this should be a our last trip in ICU (cross your fingers) He is exhausted but otherwise fairing pretty well. We walk a lot, talk a little and plan everything to do with Addi. I hope to get her up here to see Daddy today, hopefully that will motivate and encourage him right along.
But on to some exciting news I hear you all tore up the dance floor at the Addi's Cure event! I immediately went to the paper and found http://www2.ljworld.com/news/2008/jul/19/fundraiser_assists_lung_cancer_patient/?city_local
Wow, you all are amazing! A big thank you for everyone going and an even bigger thank you to everyone that helped plan the event. I am afraid to list people so if I forget someone, please add them to the comments, Pa and Mom (aka Larry and Terri Morgan), Cyndi and Ami Harvey, Crystal and Wyatt Dodds, Curtis, Erin and Ryan Morgan, Bill, Jen and Isley Newton, Stephanie Temple and the Temple Family and all the wonderful business donating items and to the Morning Donut Crew, I will be there soon to give my two cents. (Someone has to help you all out, Harry!)
Take care and thank you again
Love,
Christi, Bo and Addi

Thursday, July 17, 2008

Well Bo has done it again, he made it throughout the night without the vent! Yeah...he is on his way out of ICU. All he has to do is control his anxiety, control his CO2 levels (he doesn't really have much say in this, but we can hope he can control it) and keep exercising by walking around without his stroller (soon).
We had a really good day, we watched a movie together and rested a little. We talked about the big picture. All the wonderful things we want to do with our daughter when things get better. Go boating on the lake, we want to walk more trails in the mountains - camping (maybe we will start in the backyard), take her to the movies, visit the zoo and teach her how to fish. We are trying not to focus on the day to day issues and keep our eye on the prize, one small baby step at a time.
Wish Bo luck tonight and some peace.
Love
Christi, Addi and Bo
PS Do not forget about tomorrow night's Addi's Cure Event in Kansas. Thank you all that have spent so much time and effort planning the event. Thank you so everyone that is attending. Bo and I are so sad that we are unable to attend, but I promise you next year it will be one huge party!

Wednesday, July 16, 2008

Good Evening everyone - Bo had another great day. He is one walking machine. Today we walked to the 9th floor (top floor) and visited the helicopter pad. The pilots happened to come by while we were looking out the windows. They asked us if we wanted to see the helicopter up close and of course we did. So Bo walked all the way outside, up a ramp and across the pad. It was nice to do something not so hospital "ish". The pilot even gave us little helicopter wings. One the way back it was a trick to not let Bo's Stroller/Walker go to fast down the slope, but somehow we did it.
Bo is working on staying off the vent tonight so wish him luck and prayers. Please let the CO2 levels stay down during this process.
Love to all
Christi, Addi and Bo

Tuesday, July 15, 2008

Good Evening - Today was a day of trying to get some more sleep. Bless Bo heart, he is so obsessed with his lack of sleep it is driving him more crazy. I keep reminding him that he needs to be patient, we are still in ICU, so lets not push things to much. We have come so far and he is walking better, hopefully soon Bo will be able to walk without the stroller and use the walker then walk on his own. (Sorry if that was misleading to everyone about his walking, right now he uses a stroller under his arms so his feet push him along, next he will use a walker to help hold him up, then we will try to get some laps in with just himself walking) I have to constantly remind myself we are still in ICU and this will be a little longer to recovery.
Bo is talking a little bit better. But to explain that, Bo can only get a couple of whisper words out. He is working on getting his diaphragm stronger, so in time we will get a couple more and then maybe a sentence. He is excited to talk with everyone, but it will still be a little while longer. Much less it is impossible to get cell phone service in the hospital something to do with the machines and concrete walls.
If anyone has any questions please let me know. If I have confused you about anything, let me know and I will try to explain again. Once we can get stable enough to go to step down, I will have Bo explain the best he can also.
Take care
Christi, Addi and Bo
PS - Uncle Jeff and Aunt Mary thank you so much for the donuts!

Monday, July 14, 2008

Good Evening Everyone - Things here are stable. Nice to stay. Bo did a couple of tests today that he passed with flying colors. It doesn't really change anything other than we know that he is healing. He took the swallow test, which allows him to swallow his medicines and chew up ice chunks. Once he has the procedure that will help control his acid reflux then he will be able to eat more. That isn't scheduled for a while though, so Bo is a little frustrated with the lack of eating but knowing that he swallows properly.
Bo is talking more and more, he can only do it for a short amount of time with the valve in, but it is wonderful to hear him talk and be able to describe what he is feeling. (Currently it is frustrations, but I am just glad he can express anything)
Tonight they are going to try and leave him off the vent and see how tired he gets. So wish him lots of prayers for his CO2 to keep going down, the strength and patience to withstand the need for the vent, and pray that Bo can get a little sleep tonight, Sleep is not an easy thing to do in a hospital.
Love
Christi, Addi and Bo

Sunday, July 13, 2008

Hello - Things today ran the same course as yesterday. We were off the vent for 15 hours (all day) and then back on tonight to rest some more. Bo's CO2 levels actually came down a little today, so that is great news. I pray for the doctors so much because Bo (and all the patients) walk the thin line of how hard to push a patient to get stronger and when to let them rest. Bo gives very little wiggle room before he is pushed to far. When he seems to go to far, it sets him back a couple of days. So that is truly frustrating for all. With that being said, we are moving forward.
Mondays are always a fun day, the doctors come in and reassess what the game plan is for the week. So tomorrow I should know how much the want to push Bo, what the obstacles are for the week and where are numbers have moved themselves to....Bo has a tendency to not really fit the norm. Shocker there!
Someone asked me to keep posting what we should pray for, so tonight please pray for the doctors, for Bo's diaphragm to get stronger and for his CO2 numbers to come back down closer to the range they should be in.
Thanks everyone
Christi, Addi and Bo
PS - The Charlotte Observer wrote an article about Bo and our upcoming Touch a Truck event in September.
http://www.charlotte.com/239/story/709726.html
PSS - Do not forget this Friday our great event in Kansas!

Saturday, July 12, 2008

Good Evening Everyone - as I mentioned before, Bo had a pretty uneventful day. He was off the vent most of the day and then back on to rest tonight. The doctors are walking that thin line of how hard to push Bo. I have come to realize that Bo is still Bo and currently in the same situation he has been for the past 2 years. What I mean is, every doctor we visit is confused by the appearance of Bo. He looks so healthy (since they found the cancer), but when you look at his x-rays he clearly had diseased lungs. I think the same is right now. Bo looks really good, but his lungs and the muscles that are supporting them (and the same ones that were not able to work to full capacity for 2 years) are still a little weak and need some slow circuit training. So training slowly is what we are doing.
On another note, Bo did get to talk today for about 30 minutes and then it wore him out. He was pretty sweet to me and all the nurses thanking them for all the care and attention they are giving him. He hates that they have to take care of him, but greatly appreciates everything that they are doing. It was good to hear his voice, not matter how weak it is right now. Something new to work on.
On an extremely sad note, today Bob F.'s wife lost her battle today. Bob is the most amazing man, therefore I know Henrietta was incredible along with their family. Please just pray that Bob and his family can find peace and strength these next couple of days. I will desperately miss them all and their support. They are my family when my family cannot be with me. Bob is my friend, my inspiration to walk in the door some mornings (he was the most positive and sweet man I know, know matter what was happening) he is a hero in the struggle that loved ones have while watching their family members fight for their lives. Bob thank you for showing me how to have grace during our most desperate times. I will continue in a manner that I hope will make you proud of me and calling me your friend. I love you all.
Love
Christi, Addi and Bo

Friday, July 11, 2008

Hello all! As I mentioned before today would be a pretty uneventful day, boy do I love those. We just sat and hung out. We started the morning out getting the good news that the tests they were running came back negative so that is awesome and a huge relief. Then Bo did a trach trial for about 4 hours and then we rested most of the day. I think Bo just needs a little time to let his lungs rests from the busy week. They haven't let him try to talk because he has been on the vent (he can only talk when he is off the vent and they plug the trach) So we wait. Bo is coming around and we are now setting day by day goals and prayers. Tomorrow Bo would like to be off the vent for 8 hours, walk 3 times and be able to pass the swallow test so he can drink some liquids (they said they would do the test tomorrow, but we are a little jaded and hope the come tomorrow, but we won't hold our breath since it is the weekend)
Love and Prayers to all, but a special one to Jay's Dad (see comments)
Christi, Addi and Bo
PS - Bob's wife is amazing the doctors with he will to live, keep those prayers coming and pray that Bo can ride the waves of the ICU

Thursday, July 10, 2008

Good Evening and all I can say it Sorry...we are on Duke time. They finally got Bo's vocal cord procedure done late this evening and everything looks good, but tomorrow morning will be the true test. He was sedated when I left tonight (awake enough to mouth that he loved me) so we will test those vocal cords tomorrow. With that being said, they put Bo back on the vent to rest tonight (he has multiple procedures done lately and needs some TLC) That will restart the clock of time of the vent, but to be honest I am not as concerned with that anymore. I know Bo can get off the vent, I just want him to do it without stressing his body out. So when we leave next time it will be for good. No more stress. Please pray that he can get the necessary rest and all test will come back negative so we can just rest and move on.
The next couple days should be uneventful with Bo just resting and working on getting his lungs to properly oxygenate getting the carbon dioxide out of his system that built up.
Take Care and Love
Christi, Addi and Bo

Wednesday, July 09, 2008

Hello all! We made it through another 24 hours off the vent! Bo is getting stronger again and hopefully we will move out of ICU within the next week. Needless to say, he was a little anxious last night to stay off the vent all night, not much sleep, so this morning he did a lot of catching up. A big factor in determining when will be out of ICU will but the biopsy results they did today. That procedure is always a little rough for Bo, so he did some sleeping and resting up all day. We will not know anything for a couple of days. Please pray that the results come back with nothing new, and Bo's reason for CO2 raising is something simple, like his lungs just over exhausted themselves with all his walking to get out of the hospital. That is an option and I vote for it.
Bo is still scheduled to have his procedure for his vocal cords tomorrow. This will happen sometime in the last afternoon, so I will try to take my computer tomorrow so I can post that Bo is up and talking, wouldn't that be great? I sure would love to hear his voice, it has been a long time.
Rest up and we love you all
Christi, Addi and Bo
PS - Bob's wife is holding her own, so keep praying for her!

Tuesday, July 08, 2008

Sorry it took me so long to post, but now back being in ICU I cannot use my computer. Bo's levels have come back down with the use of the vent. So that is good. They are still unsure what caused this to happen there could be a couple of different solutions or a combination of different things. This could be something we may never have the answer to, but all I care about is that Bo feels better.
He is on another trach trial where they are going to test his blood levels and try to keep him off the vent as long as they can. Bo is extremely anxious again and a little afraid to sleep without the vent, but I know he can do it. I just pray it will not take such a toll on him like last time. His time in ICU will be determined on how well Bo breathes on his own and how long it takes him to do it on his own. This will also determine when he will have the vocal cord surgery. We have now rescheduled for Thursday in hopes that tonight will be a good night.
With that being said, I would like to ask for a favor, please pray for my friend Bob F's wife Henrietta F. She is having a really difficult day and needs all the prayers we can give them. Bob has been my angel through all this in helping me keep perspective, faith and love. I can only hope to carry myself with as much grace as he has and I pray to have the lifetime of love that they share. I know without even speaking to Mrs. F that she is an amazing woman, her husband is truly a keeper.
Love
Christi, Addi and Bo

Monday, July 07, 2008

Hello everyone again...well today we hit another bump in the road. Bo was put back in ICU this morning to use the vent. They want to do this to rest his body. (All the sleeping this morning was the first sign that something was a little off) When they tested his blood gas his CO2 numbers were up enough to require the vent to rest his body. (CO2 is the carbon dioxide being released from your body, Bo isn't getting enough of this out)
They are hoping that with a little rest that this will correct itself in time, we will know more tomorrow morning hopefully. With that being said, please pray that his CO2 levels will lower with rest and time and this ICU stay will be short term. Bo has had a trend of doing everything twice so let's hope this corrects this problem and we will be out of there by the end of the week.
I will write as soon as I know anything
Love
Christi, Addi and Bo
We officially have a clean tube this morning! Yeah, one procedure down 3 more consults to go. Today they have to recheck his gas levels, which involve him getting blood drawn and checking levels that way. Once they receive the results from that one, then they will decide to put the smaller trach in, this should hopefully be done today, we will see, maybe tomorrow. In the meantime we will wait for "The Wound People" to consult on his hand and see what the next step will be on that one. Then we are still on for Wednesday for the vocal cord procedure, let's hope the blood gas doesn't throw that one off to much.
Bo is resting now from his procedure this morning, but I will be sure to write more later.
Take care
Christi, Addi and Bo

Sunday, July 06, 2008

What a nice and relaxing day...a big thank you to Lauren (and always Evelyn) Between the two of them I know Addi's is in good hands. (They have been doing some wonderful babysitting and I am greatly appreciative.) Bo and I have been meeting with the doctor's to schedule procedures, they thought that today they would downsize his trach and put the steel one in. This is the first step in closing the trach up and will be much more comfortable for Bo. But once again, the parts were put in this morning and then we wait. And we waited all day, nothing. They said hopefully it will happen tomorrow. Tomorrow we have scheduled the replacement of the feeding tube (one of them is clogged) This is suppose to be first thing in the morning...hmmm I am not trying to sound unappreciative for everything Duke has done, but this is the most frustrating part.
Bo and I did spend most of the day together, with me translating to the new doctors and nurses. I hope this makes Bo feel better knowing that I will say what he wants to say and stress what is important to us. (them not sticking him 5000 times trying to get some blood) Bo is doing well and hopefully this will be a big week of accomplishing many minor medical tasks.
Thanks for the thoughts and prayers.
Love
Christi, Addi and Bo
PS Nothing about the hand yet...

Saturday, July 05, 2008

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

Friday, July 04, 2008


I completely forgot before Happy 4th of July!

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

As I promised more information on the Party in Paradise in Lawrence. This is July 18th at the Knights of Columbus Hall - 2206 E 23rd, Lawrence KS 66046 from 5:30 - 10:00. Tickets are being pre-sold for $20 which will include a catered BBQ dinner from 6-8 with music to be dancing to all night long (well until 10:00, that is late enough for me, but I do know those Katzers like to party - with everyone married we will have to find new excuses to party)
To purchase tickets or if you are unable to attend and would like to make donations - we are always still looking for silent auction items, please contact Terri (Ma) Morgan - 785-842-4008 home or 785-865-8522 or Cyndi Harvey (old sister, haha) 785-550-9376 or addiscure@yahoo.com . Thank you again everyone for your prayers and support of Addi's Cure. We will make a difference in this battle...
Love
Christi, Addi and "Resting in his Own Room" Bo
Well we made it through our first night in "step down" Bo was a little apprehensive, so Addi went and stayed at her friend Evelyn's house and I went to keep Bo company. As usually Bo handled everything great and is moving forward to tackling the next hiccups. Part of his stomach problem is that he has a clog in his feeding tube, hopefully that will be corrected today. (with the holiday everything is short staffed and I am not sure what is getting done) Then next week we will have to procedure for his vocal cords. (I think this is the most frustrating for Bo, not being able to properly express his needs. We are getting by right now, but I know he would like to talk) With all that being said, we expect a quiet weekend with nothing really changing except for him walking more and more.
I will post more tonight and some great information about the Addi's Cure event being hosted in Lawrence Kansas on July 18th. We certainly hoped and planned to be back for this event, but that is still up in the air for Addi and I. We would greatly appreciate any help and support we can get at the date gets closer and closer. I will attach the flyer tonight when I get on the proper computer. My family and friends have been working really hard on this event (considering we have been AWOL for the past month) They have some great KU items being donated and if anyone else has anything please let me know. More tonight....
Thanks for all the help and support
Love
Christi, Addi and Bo

Thursday, July 03, 2008

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

Wednesday, July 02, 2008

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

Tuesday, July 01, 2008

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