Scone-O-Rama

Dads still doing well and things look like they're on track for him being able to go home this weekend. His chest tube is still in but it's completely clamped off and sealed shut. Hopefully they'll be removing it completely within the next day or so.

Many if you have asked about how the other lung recipient Diane is doing. I was able to visit with her yesterday for a few minutes and she seemed like she's doing well. She had just come back from taking a shower and was so happy to hear my dad was improving. It's crazy to me to think that they still haven't had the chance to meet yet. Hopefully that will happen this week if we're lucky.

Apparently this blog is being read by more than just a few people :) My dad told me that last night that some friends in his neighborhood, the Crows (I cant remember their first names!) brought by a whole plate of ChuckORama scones for my dad after hearing about his craving. Then, when I stopped by to see my dad at lunch today, he was visiting with some old friends Bob Whitney, Don Mauss and Duane Moss.  Ironically enough, both Don and Duane recently lost their fathers to the same disease my dad has - pulmonary fibrosis.  I don't remember Duane's exact title, but he's one of, if not THE head honcho at ChuckORama. My dad had not met Duane before, but when he heard about my dad's situation (probably from my sweet friend Kassidy Spiers - thank you!) he wanted to help.  When they heard about my dads craving for their scones and honey butter and brought him a whole platter of them, along with some other food and swag and some gift certificates. We're so grateful to all of them for being so thoughtful. We'll be taking Dad to ChuckORama for sure as soon as he gets the thumbs up from his doctors.

Geez, first Coach Whittingham and now ChuckORama? I'm half tempted to write a post about how much my dad would just LOVE to meet Bono, but I'm pretty sure you'd all see right through that one, wouldn't you? ;)

5 Weeks In The Hospital - Good Times!

Tonight at about 8:00pm, Dad will have officially been a patient at University Hospital for five, count them ..... FIVE weeks in a row - without ever having set foot outside the hospital doors for even a breath of fresh air! Just the thought of it makes my heart ache for him.  Lung transplants are hard enough knowing that if everything goes as planned you'll be in the hospital for up to two weeks.  Five solid weeks in a hospital is a whole different ball game.  Six weeks?  Six weeks just might send all of us over the edge, stay tuned. ;)

Despite this not-so-happy anniversary tonight, things are actually going well for my Dad considering what he's been through.  He's now been out of the ICU and in the same room on the 5th floor for one week, which is a record, and he's doing better each day.  He still has the chest tube in to continue suctioning and draining the fluid and air that kept showing up and causing all of the problems.  The plan is to seal off the tube today, leave the tube in place for a couple of days and monitor him, then remove the tube, monitor him again for a couple of days, then hopefully send him on his merry way by the end of next week.  His nutrition has improved and he actually has had a much better appetite lately, but he's lost a ton of muscle mass - especially in his legs, so he's still got a ways to go before he'll be strong enough to do simple things like get out of bed and walk around on his own.  Now that he's feeling a little better, he's also more vocal with the nurses and doctors about how he's feeling, what he needs, and what he thinks should happen next.  It's pretty funny to hear HIM telling THEM when he's planning on going for a walk, or that the respiratory team needs to come back later or adjust his oxygen, or to call his doctor to get permission to do something.

Thanks so much to all of you who have come by to visit.  Now more than ever, he appreciates visitors to help break up his day and evening - especially if you call ahead of time and see if there's something that he's craving :)  His favorites lately have been Hires rootbeer floats, McDonalds cheeseburgers, Pizza Factory pizza (pepperoni and green peppers, an Osborn family fav) cheesy potatoes, lemon meringue, peach or apple pie or carrot cake.  His doctors want him eating a high fat, high protein diet so anything that meets those criteria is even better.  He's so sick of the hospital food and really appreciates anything homemade as well. 

By the way, if anyone knows how to get their hands on some Chuck-o-rama scones and honeybutter then my dad will seriously love you forever.  Sadly, Carter was unsuccessful in his attempts to beg the cashier at Chuck-o-rama to let him just buy some scones to take to his dad in the hospital (apparently they don't allow take-out under any circumstances.)  This did not please Carter and he may or may not have gone a little postal on the heartless cashier, as the past five weeks of stress even got the best of someone as mellow and easygoing as my little brother. :)

A Utah Man, Sir .... A Utah Man Am I!

 

My Dad received a very, VERY special visitor on Saturday morning.  Ute football head coach Kyle Whittingham's daughter Kylie is a close friend and soccer teammate of my cousin Lindsey and when my Aunt Julie told him about Dad's situation and what a loyal and dedicated Ute fan my dad has been over the years, Coach Whit took time out of his busy recruiting schedule to come by University Hospital on Saturday morning and visit with my Dad and talk Ute football with him.  Dad's been a mid-level Crimson Club member forever but never in a million years would have thought he'd warrant a personal visit from the Coach.  For me, it would be like having Bono come and visit me in the hospital :)  A special thanks to Julie, Ron and Lindsey Osborn for loving my dad enough to find a way to make this happen, and a heartfelt thanks to Coach Kyle Whittingham for being so much more than just a great football coach, but an even better human being and friend.

I know it may sound cheesy to some of you, but the University of Utah is truly an important part of my dad and my entire family's lives.  Dad graduated from the U's business school and enjoyed every minute of his time spent on campus and as a member of the Beta Theta Phi fraternity.  My brothers and I grew up going to countless Ute football and basketball games with my Dad in our family's red VW bug.  All of his kids attended the U and we all continue to attend as many games as we can with our own kids.  I've worked here off an on over the years and when it became necessary to go back to work full time it was the only place for me.  My co-workers have enjoyed having my dad drop in to visit me at my office on campus while he was on his way to or from one of the many doctor or clinical trial visits he's had over the past two years.

So when our family had to make the decision of where to have Dad have his lung transplant - UCLA who does 80-90 transplants a year, or the U's much smaller program that only did nine transplants last year - it wasn't even a question for us.  We felt so lucky that the U was even able to get my dad on the list and that he wouldn't have to go through this and recover for months afterward so far away from home.  The U's lung transplant team normally only accepts patients under 65 years old.  They made the exception based on his amazingly good health and discipline and the support network they knew he had to help with his care after the transplant.

We are so incredibly grateful and impressed with the doctors, nurses and staff of University Hospital - and yes, even our head football coach!  They are truly top notch and are so invested in all of their patients, not just my dad.  Even little things like the free valet parking service the hospital provides, which seems like such a trivial thing, but to family members who are making daily trips to the hospital - often times stressed and in a hurry to get to their loved ones, it becomes anything but trivial.

I've worked in development (fundraising) in Salt Lake for over 15 years and I'm very familiar with and have even visited personally with many of the donors whose names are posted all around the hospital and on  plaques next to many of the rooms my dad has stayed in over the past four weeks.  I know how much these families have contributed to countless nonprofit organizations in our community, but I've never been more grateful to them than I am now.  We are so blessed to have a research University with a hospital of this caliber so close to us and to have so many philanthropic families who have made it all possible.  I've been a die-hard Ute fan all my life, but I've never been more proud to be one than I am now, and I know my parents and brothers feel the same way.  Go Dad!  Go Utes!

You ve Got A Friend

You know how they say you can judge a man by the friends he keeps? Well that, in a nutshell, is one of the many reasons why my dad is such an amazing guy.

I've been here with dad in the ICU most of the day today and have seen several of his good friends come by to visit him. One of his closest friends from high school, Jim Carlson, stopped by with rootbeer floats from Hires, their favorite burger joint. And earlier in the day his friends Mike Petersen and Bart Hopkins stopped by to check on him and brought him a Cottonwood Heights 5k shirt (which made me cry, so sweet!) There are so many others who come by all the time that I know I'm forgetting, but I hope you know how much we appreciate it and how much your friendship continues to mean to my dad.

Good news??

Dr. Cahill and the surgeon Dr. Abraham did another broncoscopy a few minutes ago to see if they could find where the air leak was coming from and they said everything looks good - the soochers are healing nicely and they didn't see any leakage. I could even see that things were looking better than the last time- less gunk down there than before. There's a small chance there could still be some rejection, but they don't want to biopsy the lung yet or start him on steroids until he gets some more meat on his bones and this air stops showing up in his chest and around the heart.

I guess he'll be here in ICU for another couple of days, but what do I know?

ICU ..... Again :(

Came by to see Dad this morning on my way to work and as I started walking down the hall to his room I noticed the door was open but the bed was gone and the room had been cleaned. I panicked and asked the closest nurse where my dad was, and they said he'd been moved down to the 4th floor ICU around 4am because he was just struggling too much with his breathing. He's on an oxygen mask with full oxygen but I was able to talk to him - I'm still waiting to talk to the nurse and see what's going on. Hopefully they'll get this figured out soon. I think this is the 9th room he's been in over the past 3 1/2 weeks. I'll post an update as soon as I can.

23 Days And Still In The Hospital

Dads hanging in there - he's still up here on the 5th floor in a regular room, versus one of the many ICU rooms he's been in over the past three weeks. The doctors have been trying to figure out the cause of the air that's still floating around inside his chest cavity that prevents his lung from expanding all the way. They just came in and added a new, larger chest tube which, based on this last X-ray, has now allowed his lung to expand. Now they're hoping that we'll see these air pockets subside and be able to take this tube out in a few days. At best, he'll be here at least 3-4 more days, poor guy!

We're all ready for him to get out of here, as fun as this place is :). I had a dream the other night that I couldn't find my dad in the hospital and as I ran back into the elevator and went to push another button, they now said "1 3/4ths floor, 2 8/9ths floor - just like the train station in Harry Potter, and I had to run at the doors really fast to try to get off. This place is starting to make us all a little crazy! Hopefully we'll all be laughing about this one day soon as we're sitting at home around a nice fire and NOT listening to the old hacking cough and watching him haul his oxygen around. It's still a wonderful life :)

AFTER OVER 41 YEARS OF MARRIAGE, I CAN SINCERELY SAY THAT DWIGHT IS AND ALWAYS HAS BEEN THE BEST PERSON I KNOW. IT HAS BEEN SUCH A STRUGGLE WATCHING HIM BATTLE THIS DISEASE AND THE TERRIBLE EFFECTS IT HAS HAD ON HIM. BUT ALL THAT IS IN THE PAST BECAUSE HE HAS A HEALTHY RIGHT LUNG AND WE HAVE SUCH HOPE FOR HIM NOW. ON DECEMBER 23RD WE GOT "THE CALL" AND OUR SON CARTER DROVE US UP TO THE UOFU HOSPITAL. ON CHRISTMAS EVE 2011 HE RECEIVED THE NEW LUNG AND STARTED THE LONG BATTLE OF OUTLASTING THE NEGATIVE EFFECTS THAT KEEP COMING OUT OF NOWHERE. THE DOCTORS, NURSES AND STAFF HAVE BEEN INCREDIBLE. I HOPE NONE OF YOU EVER HAVE TO EXPERIENCE THE CHALLENGES DWIGHT HAS OVERCOME. RIGHT NOW WE KNOW HE IS IN THE CARE OF MANY INCREDIBLE PEOPLE. WE ALL HAVE SUCH HOPE FOR DWIGHT'S FUTURE. I HAVE SO MANY THOUGHTS AND EMOTIONS THAT IT WILL TAKE AWHILE TO GET ALL THOSE THOUGHTS TOGETHER BUT I CAN SEE THAT IT WILL THERAPUDIC TO GET THE THOUGHTS OUT THERE. BY BEGINNING TO WRITE ABOUT THIS EXPERIENCE I HOPE IT CAN HELP OTHER FAMILIES WHO ARE EXPERIENCING OVERWHELMING CHALLENGES. RIGHT NOW, THE IMPORTANT THING IS THAT WE STILL HAVE HIM AND HE IS DOING BETTER. WE HOPE TO GET HIM HOME IN A FEW DAYS (SCARY TOO!!!!!) SINCERELY, OZZIE'S BIGGEST FAN CHRIS.

Good news from the broncoscopy!

Carter and I just got to watch the broncoscopy and Dr. Raman said things look ok. They were looking to see if the sutures were leaking air into his chest cavity, but they looked good which is great news - no new surgery. They think it's air that's being generated in his bad lung from the bpap oxygen he's had to have and that loose air floating around is putting pressure on his lungs and not allowing him to breath fully.

There's also a lot of gunk in his new lung that he doesn't have the reflex to cough up yet because those nerves aren't connected. They'll continue his respiratory vest treatments that basically shake his lungs and then keep encouraging him to cough. Having the chest tube back in has helped release a lot of the air, but it also is a pain for him to have it in since it's uncomfortable and makes it harder to breathe deeply. He's going down for a CT scan in a few minutes which will let them see if any air pockets remain.

All I know is that he's in great hands up here and that they're doing everything possible to give this new lung a fighting chance. He'll obviously be here for a few more days, so we'll keep everyone posted.

Not so fast ...

This morning when Carter and I were here visiting Dad he was doing great - he only had his nasal canula set at 1litre, he had eaten a decent breakfast, chest tube and catheter were finally out, etc. but we were a little shocked when the doctor said be might be going home tomorrow - we had no idea it could be that soon, which had us worried about all of the logistics that go along with taking care of him at home.

I stopped by tonight around 6pm thinking I'd be here maybe 20 minutes and when I walked in, Dad had just called the nurse because he had been starting to struggle with his breathing, getting cold and clammy, heart rate rising. Within about 10 minutes the doctors had determined that his new lung had collapsed and had me leave the room do they could re-insert the chest tube and do a broncoscopy to see what's going on. Please pray for him .... again!

Bye Bye ICU!

Dad was transferred out of the ICU yesterday and moved up to the Specialty Transplant unit on the 5th floor. He's having his last chest tube removed today and just completed his longest walk down the hallway - about 200 feet!

Woohoo!!!!

Dad's tube came out early this morning and he's doing fine. He's anxious to eat and is currently having a swallow test done to see if he can eat solid foods. Dr. Cahill was here and said his chest sounds good and that seeing him look so good has made her day.

Hopefully he'll be transferred out of the ICU soon and back up to the 5th floor. We're all so grateful for the prayers and encouragement from all of you over these past few days where things were pretty scarry. Your love and concern have carried all of us.

As we I look at my dad, smiling and hopeful, I can't help but get choked up at the gratitude I feel for the donor for the precious gift she has given our family. Life is good!

Almost there!

Wasn't quite ready for tube to come out this morning - so close! The good news is his last chest tube will probably come out today which will help him take deeper breaths and exhale deeper. They're planning to have him walk twice today which will really help him do better on his spontaneous breathing tests which are how they determine whether or not he can handle breathing on his own without the tube. He looks good and has definitely got his fight back :). He's now been in the ICU for the majority of the past two weeks and unable to talk or eat or drink normal food for most of it as well. We're all so ready to be out of here, but we trust the doctors and know that they're taking extra precautions to avoid having to reintubate him again. His infection is being treated with heavy antibiotics and we're hopeful that they're doing their job.

Happy Tears

Yesterday after dad's broncoscopy, Dr. Cahill and the other doctors walked out of the room to the nurses station and were discussing dad's situation and what they had seen on his scans. I was teetering between staying in the room with Dad and also trying to overhear what they were discussing outside his room. Once I knew my Dad was okay and relaxing after the procedure I walked out of the room to ask Dr. Cahill how she thought it went and whether or not she was happy with what she saw inside dad's lung. I instantly got a pit in my stomach when she and one of the transplant coordinators looked up to answer my question and looked as if they had been crying. Dr. Cahill quickly wiped away her tears and started telling me that things looked okay with Dad, which had me wondering then why they had been crying if everything was okay?

It had me worried all day yesterday and last night, wondering if they were just being overly optimistic with my dad and didn't want to break the bad news to us yet or something? So this morning I asked one of the coordinators what the tears were for, even though I knew it probably wasn't any of my business. She said that they had just been told that one of the first heart/lung transplant patients at the U had passed away and they had just read his obituary. He lived a good 20 years post transplant and was near and dear to many on the transplant team at the U, which as you can read from his obituary, completely explains Dr. Cahill's happy tears. I know that one day, maybe 20+ years from now :), Dr. Cahill and her team will shed happy tears for my dad's passing as well, as she recalls her fond memories and admiration for my dad and the amazing man that he is.


Jeffrey LaVere Wright Obituary: View Jeffrey Wright's Obituary by Salt Lake Tribune

Time To Dig Deep

This morning Dr. Cahill and Middleton did a broncoscopy where they insert a scope down the ventilation tube to see the inside of the throat and lungs.  Dad was a bit sedated and couldn't feel it or see the screen and I was excited that they let me stay in the room and watch the procedure.  When the camera went over to the right lung, you could see that there was some black goop that looked like caviar as well as some yellow gooberish stuff.  Cahill said this was the infection that they're treating with antibiotics, but they actually seemed relieved and said it's still okay, that they might be able to remove the ventilation tube tomorrow morning.   I have so many thoughts in my head that I could write about Dr. Cahill and the amazing team she is working with, but it deserves it's own post entirely, which will come soon, I promise.  Let's just say for now that today I saw her as more than my Dad's doctor and the head of a large transplant team - I saw her as one of my Dad's dear friends who truly lives to help him and other's like him live.  She is as invested and worried and concerned as we all are, and yet she probably has a dozen other patients just like him to look after.  See?  Don't get me started ....

Bryan and Janalyn came up from St. George again tonight and will be heading back tomorrow afternoon - they're awesome.  Dad's really wearing down mentally and kept writing questions wondering if the tube will ever come out.  He's losing patience and is so exhausted, but from what we hear from other lung transplant patients, it's to be expected.

As much as I love the times that I've had to sit alone with my Dad by his bed and just hold his hand, or close my eyes and rest, I also really have loved being in his room with just one or both of my brothers.  They are the only two people on this earth who have the same relationship as I do with my Dad and they love him the same way I do.  We have so many of the same memories and stories of Dad - he's a part of each of us that is special and timeless.  There's a quote I love by Clara Ortega about siblings:

"To the outside world we all grow old.  But not to brothers and sisters.  We know each other as we always were.  We know each other's hearts.  We share private family jokes.   We remember family feuds and secrets, family griefs and joys.  We live outside the touch of time."

Bryan and I were able to sit with him in his darkened room tonight and just hold Dad's hand for awhile while he rested - no talking, just letting him rest and feel us there.  I had been feeling a little down and hopeless about things this afternoon, but that time spent with the two of them gave me just the boost I needed to stay positive and be strong for Dad in the morning.  Carter and I have had similar opportunities to spend quality time with him and Carter's strength and optimism are always a comfort.

As we were leaving for the night, Dad wrote down a question asking if we brought his music.  Bryan had some headphones for him and I had a playlist of some of his favorite MoTab music, some George Winston and Paul Cardall piano stuff and some of his favorite classical music.  I think Dad knows it will help him relax, focus and dig deep as he feels himself getting discouraged.   Even when he's discouraged, he's still fighting.  Amazing.

More surgery for Diane :(

Apparently Diane, the other lung recipient, has to go back into surgery to have the lower part of her lung removed.  Please keep her and her family in your thoughts and prayers.  She and my Dad have been through the ringer these past two weeks, but they are both strong and we have complete confidence in the excellent doctors and nurses who have been so diligent in their care.  Hopefully tomorrow will bring better news for Diane!

Two Steps Forward

My hero! Just another marathon to him, I guess :) Dad just walked a few feet down the hall, and when they turned around and got back to his room he motioned forward that he could keep going and surprised the nurses and therapists. To be walking after what he's been through over the past 24 hours is a miracle. I will remember this picture forever

One Step Back

So this weekend Dad took two steps forward and yesterday was one step back. He was moved back down to the ICU yesterday afternoon because of some fluid thats been building up on his lung, as well as an infection and an atrial heart flutter. They had him on a Bpap oxygen mask that's basically like having a giant fan blowing a ton of oxygen into your mask. If he took it off for even a second his o2 levels would plummet. They gave him a med that causes his body to urinate like crazy in an effort to try to rid itself of the extra fluid in his lung, so the catheter had to stay in (I was mistaken when I said in my last post that it had been removed over the weekend.) It's been in since his surgery, so the sooner it can come out, the less chance for more infection.

He had to be reintubated this morning with the breathing and feeding tube, because he just wasn't able to stabilize his breathing even with the mask at full oxygen output. Last night he was breathing so rapidly and irregularly that it left me breathless just sitting there watching it. His hands and feet were like ice cycles from the lack of oxygen but he was in a cold sweat the entire time and said he was hot. When they let me into his ICU room, he tried to talk through his mask and told me with tears in his eyes that he wasn't afraid and that he loved us so much.

Having the tube back in is difficult because his throat was already so damaged from having it in and taken out the last time, but he's definitely calmed down and stabilized since having it put back in. Unfortunately we're back to trying to speak sign language with him to figure out what he needs or try to interpret his writing on a white board that's unclear because of his pain meds and all the wires on his fingers and hands. The physical therapist just came in and is moving his arms to stretch. I told the therapist how my dad was (is) a regular at the Treehouse Athletic Club and how he's run 17 marathons, and Dad gave me a thumbs up sign. They're going to try to get him to walk today - stay tuned!

Just Breathe ...

Sorry the updates have dwindled a bit here over the past few days - we promise to be better and appreciate all of your concern, it really means the world to us.  Dad's hanging in there, but we'd be lying if we said everything was fine.  He's in the thick of it right now as far as his recovery goes.  He's had some issues with his heart and blood pressure, as well as trouble trying to regulate and slow his breathing.  He still has one of his chest tubes in to drain fluid but he did have the epidural and catheter removed over the weekend which was great.  Last night he was able to walk to for a bit, but it totally wears him out.  He's also extremely nautious from some of the anti-rejection medications but he desparately needs to eat high protein/fat foods to try to build up some of the muscle that he's lost over the past 10 days (and he didn't have a lot to begin with.) 

I had told my Dad that my friend Doug Akagi, who had a double lung transplant at the U a few months ago, wrote in his blog that if you had asked him while he was recovering in the hospital if he would do it all over again, he would say no.  He was that miserable and the recovery was that difficult.  Yesterday, between short, labored breaths, he said "remember when your friend wrote that?  I'm there."  Just breaks my heart, because I know how incredibly grateful he is for this gift of life and how overwhelmed he's been with gratitude, so for him to even hint at the fact that this is that difficult for him is so hard to hear.

A few of us commented last week on how we noticed how nurturing he has been with this new lung - a lot like a new mother is with her newborn, aware of every breath they're taking or not taking at all hours of the day .  You'll be sitting there talking to him and out of the blue he'll ask "what's ... my ... oxygen ... at?" and then he'll close his eyes and try to take a deep breath and slow down.  Can you imagine how odd that would feel, to be able to actually have control over the organ that was just transplanted into your body?  No wonder he's probably been a little anxious and breathing to fast. It's important for him to rest and relax, but we also know that your visits are important to him as well.  We've found that it's great for him to just have one or two people in his room, sitting out of his line of vision most of the time and not trying to talk a whole lot to him but just reading or watching tv with him and helping to get him anything he needs.   We love you all so much and appreciate your continued prayers.


p.s.  Last report on Diane was that she was recovering well from her surgery a few days ago, had her breathing tube taken out and was up walking around on the 5th floor as well.  Dad told me yesterday that he's looking forward to meeting her - hopefully in the hall one of these days :)