Thursday, August 16, 2012

Right lung is in!

Right old lung out new right lung in. Working on getting old left lung out. He has not needed to go on bypass at this time. Sats dropped a little but when the new lung kicked in they came back up he is doing well!! Omg this is really happening!

The day has finally arrived!!!

OMG I'm in shock! We got the call today for William's lungs and liver! William called me at 2:30am and they took him into the operating room at 6. We don't have any more info at this point. I'm bummed that I didn't get to see him before he went back. I am so thankful to the donors family. My heart aches for them as we celebrate this incredible gift of life!! I haven't had a break down yet....I'm sure it's coming. I will keep updated through here or at

Thanks to everyone that has supported us during this long 7.5 months we have been waiting. Thanks for your prayers thoughts and always being there

Friday, May 18, 2012

20 Weeks of waiting and I've got the blues....

Well as you all know we are still waiting....It seems like the weeks are passing faster now but they have become more and more agonizing.  As many of you know William was in the hospital the last week of April and and on home IV's through the first week of May.  I was there the week after that for my birthday and our 6 year wedding anniversary.  It was a great time but I could tell William was a little run down.  Heck I'm a little run down. 
Yesterday William started having problems with his blood sugars.  They would go as high as 550 and then all the way down to 50.  We knew something was going on.  When he arrived at rehab today they could tell he wasn't feeling well.  He needed more oxygen and was running a fever.  They admitted him right away.  Gosh I wish I was there to help him. I wish I could help his dad with all the headache that comes with an admission. I wish that I could just see him and be with him.  I wish that we would get the call!!!!

William will be in the hospital a week minimum maybe longer so that he doesn't have to go right back in like last time.  Mentally though William is holding up far better than I am.  I'm so thankful that he lets me vent to him and allows me to vent my frustrations when he's the one going through all of this.  They did three transplants this week and I'm devastated that one of them wasn't him.  I'm thrilled that three people received the gift of life and I pray for the donor families, but it hurts. 

Our daughter Jordyn graduated from kindergarten this week.  Very exciting but also makes me ache to have William home to see all these milestones.  She misses her Daddy so much.  Maybe now that it's summer break we can get up to see him and stay more than just a couple of days.  Please keep us in your thoughts and prayers. Those perfect organs are out there....

Thanks for letting me vent everyone I'm just having a tough week.....

Lesson of the day.....Blue is not really my color!

Wednesday, April 25, 2012

Life and some stuff in between

William is in the hospital with pneumonia getting a tune up. He already has his PICC line in and they have started the antibiotics he needs. I really wish I was there to help take care of him and just be with him.

I think I can safely say we are frustrated with the's been 16 weeks so far. My birthday and our anniversary are May 5th so I'm going to head up and spend some quality time with him then. Boy do I miss that man. I know he's being brave and strong for me. He's working so hard in rehab. He's up to walking at a 3 mph pace, which is almost triple where he started.

I'm trying to stay busy and that's not hard between work, housework some outdoor activities and being a mom.
People keep asking how much longer will he be gone and my answer is x plus three months. X being the day he gets new lungs and a liver. I'm so ready for day X. Please pray and send all your healing to William that his new life is coming soon.
I'm sorry I haven't blogged lately just please know its so hard for me to say we are still waiting and waiting. Just this week it has become agonizing to think about how much longer it could be. I just have to know that the right set of organs are coming and they will be perfect.
I love you William. And I miss you so much.
Lesson of the day: It's ok that it's not day x, because soon it will be!

Sunday, April 1, 2012


I hate it! The waiting we must endure. The monotony that William is having to deal with. I'm terrified and so sick of not being with my husband. I know this is for a chance at real life but he's been gone 14 weeks already.

Thanks to all those that helped make our garage sale a huge success. All those that donated items, those that help set up and run the sale, and my wonderful mom that ran the whole show. If anyone of you have items for garage sale, would be willing to help with fundraising activities in either KC or Memphis please let me know. We have almost 25% of what we need for transplant cost and some great ideas for more fund raising! Please continue to share our story.

Sorry I'm so bad at keeping up with this. It's just, all there is to tell is....still waiting. I promise when there is something to share good or bad I will keep everyone updated.

Lesson of the day...praying for patience always means you're in for a long WAIT!

Tuesday, February 7, 2012

Down in the Dumps.....

So, Jordyn and I got the opportunity to go visit William and his Dad in St Louis this weekend.  It was a great time but I am so mentally and physically exhausted.  I'm really struggling lately and I think that's why I haven't blogged in a while.  I really wanted this to be a place of positivity and really be upbeat.  REALITY CHECK....Being a transplant family is NOT fun all the time.  I know this is all for a reason. I know this is for a shot at having a "normal" life again. I know that I should be the one who is strong and patient.  But guess what?!!? I am completely derailed by this whole situation.  My back of course comlicates things, the long drives get really hard on my back.  I need a whole day to recover after getting home.  This not only cuts our visits short but also affects the quality of our time spent together.  I wish I had more time to be a mom. I wish I had more time to clean my house.  I wish that I had time to fundraise(donations have completely stopped). I wish I knew someone with a teleporter!!!!!!

I miss my husband!!! More than words can express I wish that we didn't have to be separated during this whole time.  I know that which doesn't kill us makes us stronger but sometimes I feel like this is killing me. I hate to be so negative but maybe this outlet will allow me to start opening up to my friends and family again.  I feel like I have to maintain this facade but it really has isolated me from everyone.  I put a smile on my face all day, I maintain this strong courageous exterior...yet I cry myself to sleep every night.  Maybe it's time to let you all know that I'm struggling. Maybe it's time to reach out and ask for help.  I feel so guilty being sad...this opportunity gives us hope and life, but right now I feel a little hopeless.  Even my faith has been challenged.  Where do I go now?

I want to take a moment and thank those people who have kept me going throughtout all of this...First and foremost, my father in law, Bill, who sits vigil day in and day out keeping my love safe. My parents who not only keep Jordyn when I work but who also co-parent with me, feed me and mentally sustain me.  My mother especially who not only keeps up with my five year old but loves me day in and day out, no matter how stressed or angry I get.  My best friend Kelly Bailey (aka Moochie) who answers my crazy phone calls as well as organized a very sucessful fundraiser at her school.  Nikki Riddle who in her own greif has been such a huge support to me and my whole family, such grace and unquestionable love(Spencer is so proud of you).  Kelley Branham, here in Memphis, that although I've been distant you have kept up with me and loved me unconditionally.  My CF wives who although I haven't posted lately are always there when I need you.  I cannot forget William who braves this battle and seperation with me. He puts up with the exhausting treatments and pokes and prods, the pulmonary rehab and endless phone calls from me(I love you baby!) And so many more people that I didn't mention, it doesn't mean that I don't love and appreciate you it's that my brain is fried!!

Thank you all for letting me vent I feel so much better.

Lesson of the day: It's not all sunshine and puppy dogs and sometimes that's okay!

Sunday, January 22, 2012

A picture is worth a thousand words....(Photo blog)

 I know I'm terrible about blogging but life just has been so busy.  William spent a week in the hospital in St Louis.  I spent a week in misery missing him and trying to adjust to life with him away.  The house is so quiet but my mind won't stop.  I had a repeat nerve block done on my back on the 12th and felt so good on the 13th that I picked Jordyn up from school and headed to St Louis.  Here are some photos from our fabulous weekend.

 She was ready to leave without me!!

 Jordyn and her snowman! She was so excited to actually get to play in the snow since we have had such a warm winter in Memphis. 
 After warming up and getting dry we headed to the science center with Grandpa Bill.  We even got to see an IMAX movie.  We are amazed at how much free stuff there is to do in St Louis.  Such a cool town!
 After the Science center we sat back and watched some football, even though the games were lame.  Daddy and Jordyn colored! I'm not sure who enjoyed this more.
 Then we got some exercise in the Haven House Gym.  It was a good time and great for Daddy's lungs and for my heart!
 Jordyn and William's pictures even made the wall at Haven House and we think it also made it into their yearly video which should be posted to their webiste soon.
 As I packed up the car to leave Monday morning, William and I realized it was going to be a beautiful 70 degree day so he call rehab and asked if he could walk the Zoo with us instead of walk on a treadmill, they of course said YES!! They didn't know he would be wrestling Elephants though! FYI the zoo is also FREE!
 Some how I don't think he's brave enough to pull this one's tail though..
 Jordyn and Grandpa Bill walking the Zoo....I love this picture!
 Just before leaving the zoo we snapped one more picture of us.  We had a quick lunch and then said our very tearful goodbyes....It's so hard and Jordyn was very tearful which was hard on all the adults trying to hold it together.  Jordyn said to William to reassure him "It's ok Dad, you will be in my heart!"
This is my favorite picture from our trip.  Their love is amazing to watch. 

Jordyn and I are home now and trying to adjust to life without our rock but we know he is remaining strong and that Grandpa is taking good care of him. I'm so thankful to my parents for helping raise Jordyn while Willaim is away.  I'm trying to keep my emotions together but I miss my husband so much.  I miss the sound of his treatments.  I miss tripping over the oxygen tubing everywhere.  I even miss his cough.  I know that this our going to be our new lease on life but I am already impatient and he's only been listed 19 days.  Please continue to pray for us and keep sending your postive thoughts.  Willaim just finished his two weeks of antibiotics and should get his PICC line out on Monday as long as he is feeling better and all of his labs look ok.  He will continue to go to rehab three days a week and more if they think he's having problems.  He is in really good spirits and is really enjoying the company of his dad. I am going to make a effort to sit down once a week and update everyone even if it's just to say there are no changes and we are still waiting.

Lesson for the day: The best things in life (and St Louis) are FREE! ;-)