Tuesday, February 19, 2008

Christi here (sorry for the typos in advance)...we finally got the internet working, but it think it stressed Bo out more than anything now being able to work. Now that it is up he is exhausted, so now you get me. Needless to say we made it through Day 2 of the "testing" . Today was mostly talking and meeting the people that would weigh in on the decidion. But let me back track a little and get into more detail about Day 1 (Thanks Brian for posting and I apologize for all that have called and we haven't spoke with, cell phone reception isn't the best in a hospital. It might have something to do with the steel beams, the machines or possibly all the cell phones the doctors are on) Anyway,

Day 1 - Orientation - we met Ellen the social working extremely nice - 1st person to realize Bo and I talk a LOT
Then Blood Vials - like 15, I think they might feed vampires with all that blood
Fluoroscopy of Diaphragm and Barium Swallow - Bo has acid reflux, we knew this, he got to see it go all the way up to his clavicle - gross but interesting - I did not see this, but heard in detail from him
Back to the Pulmunary Lab for breathing tests- he did better than Jan. still not ready to run any marathons (we are hoping he did better because of the new chemo kicked it back some, but it probably won't get rid of the cancer. We just need it to work while we are waiting to hear about the transplant.)
Back to Radiology for Differential VQ scan - Lungs still bad with cancer - Confirmed again
We met Dr. Davis - the Transplant Surgeon, arguably the best in the country if not the world. We were extremely impressed, but did walk out a little down because we had to go through all the pitfalls (we knew about these, but sure did suck to hear about, but they have to cross their t's and dot their i's we get it...moving on) Hopefully we impressed him and he is willing to take the chance with us.
Then we thought it would be real smart to add an appointment with Susan our PA with oncology. She is so great. Susan and Dr. Crawford are coming to Party in Paradise, so we are excited for you all to meet the people keeping us alive and doing well, physically and mentally.
We finished the day, which started at 7:30 with chemo at 5:00...long day

Day 2 - pH/Manomerty aka a tube in Bo's nose and down his esophagus to measure acid reflux, Bo will not be piercing his nose anytime soon. We finally agree on something. He leaves the tube in his nose overnight... I pull out in the morning - wish me luck
Then we talked all day...a LOT...the psychologist - confirmed we are crazy, but it might work for us, Social Worker - Confirmed Bo having cancer sucks, but we talk a LOT, Financial Coordinator - Confirmed, we are nuts, but have wonderful insurance - Thank you BCBSNC and then met with Dr. Steele , Transplant Pulmonologist - Confirmed Bo's lungs do not work the best

So now we are sitting, missing our girl. Man are we missing her. She is the sweetest and everytime we talk with her asks for us to come home, but then says that Daddy's is with the doctors and "they will make him feel better" I like to think children talk directly to God, so for those with kids I might ask you to let them ask for a favor for us an make "Bo feel better"

We are certainly hanging in there. One doctor even said that he normally makes people cry, but he wasn't going to break me. I think June of 2006 is when I got the worst news of my life, everything from here is just battling to get what we think is best for Bo's future. And I plan on a great one with him and our little Addi Girl.

Take care and we will get some pictures up soon



Anonymous said...

We love you and we are praying for you guys. Know we are here for you and I will have Wyatt put in a word too. Those little guys can create wonders.

Sis in Iowa

Peony said...

I think if our Addi was old enough to realize it was her birthday today, you guys would definitely get her birthday wish. I know how hard it can be. You guys are amazing. We're always here if you need to talk A LOT MORE ;)

Anonymous said...

Piper talks about Addi and her mommy and daddy when we go to 23rd Street Brewery, so she can definitely make the connection to send an extra prayer for Bo. We will continue to pray and keep our positive thoughts going your way. We will do whatever it takes to help you out.
Take care, rest when you can.
The Glidewell Clan

Anonymous said...

Bo & Christi,

First thing out of Addi's mouth this morning when I walked her room was "I see Mommy & Daddy today"? She loves and missed you both very much. See you both this afternoon. Always with love & prayers, Mom & Addi

Anonymous said...

Christi and Bo- we miss you around the office but our thoughts & prayers are with you both. Praying for God's best!!

Anonymous said...

Bo and Christi

You are always in our thoughts and prayers love you both and hang in there
SIS in Kansas

Anonymous said...

Yes, children do have a direct line to God, most recently arrived here from God to teach us, so if Addi says "the doctors will make him better", let's all believe. The wisdom of a child's heart...Right of the mouth of your babe!

Anonymous said...

We miss you all and cant wait for you both of come back. We have you all in our thoughts and prayers.
All our love,
Candace and Walker

Anonymous said...

Thanks Christi for keeping us all updated on Bo. I am sure you were very happy to see Addi today. My prayers are with you all. You are all such an inspiration to all of us. Love, Aunt Marlene from Kansas

Anonymous said...

Bo and Christi- We are praying for you!! I should have sent this sooner but i had such a great time seeing you in the Fall during the golf. I check your blog often and have sent this link to several of our classmates!! Please know that we are thinking about you often!!!
Tippi Mace