Breath Of Heaven

As I was out running some last minute errands today, the Christmas song "Breath of Heaven" by Amy Grant came on the radio, and it brought back a flood of memories of last Christmas Eve and my Dad's lung transplant.  I remember hearing this song on Christmas Day, driving home from the hospital and how the words to the chorus had taken on a new meaning to me as I thought of my sweet dad lying in a hospital bed, trying to breathe with his new lung.  I'm overwhelmed with emotion and gratitude that he is still here with us one year later.   I'm so grateful for the donor, their family, the doctors and so many of you who have helped him and our family in your own special way.  But mostly I'm grateful to God, for his son, for their mercy and for the "breath of heaven" that our family has constantly felt surrounding us this past year.

Merry Christmas everyone!

Chorus:
Help me be strong, help me be, help me
Breath of Heaven, hold me togetherBe forever near me, breath of HeavenBreath of Heaven, lighten my darknessPour over me Your holiness for You are holy

Read more: AMY GRANT - BREATH OF HEAVEN LYRICS 

Goodbye Coach Majerus

Like any good, red-blooded Ute fan, Carter made sure he and Dad made it to the Huntsman Center tonight to honor the memory of Coach Rick Majerus. If Bryan and I weren't living 300 miles away we'd be right there with them enjoying our beloved Cracker Jacks and Red Vines with Dad in the familiar comfort of the Huntsman Center. We've all enjoyed countless basketball games with Dad over the years and feel so blessed that he's still here with us today almost one year after his transplant surgery.

He's been slowly improving over the past few months from his heart surgery and we'll hopefully continue to see the swelling go down in his lower body. He still tires easily, but is as determined as ever to building up his strength to be able to do some of the things he loves to do.

Pictures like this one are priceless to our family now. Lets hope we'll see many more "Ute" family pictures in the years to come. Thanks for the memories and may you rest in peace Coach Majerus. GO UTES!!

He's Home!

Dad was finally released from the hospital yesterday! They have pulled the two drains and will monitor how he's doing over the next couple of weeks to see if this latest surgery did the trick. We're watching for swelling in his lower body, rapid breathing and the extreme fatigue he was feeling before the window pericardial surgery and hoping that those symptoms don't come back. If they do, then we'll discuss options with his doctors at that time.

Dad has loved hearing from so many of you and for the many hospital visits he received over the past few weeks. Jan and Anne Bagley, Jim and Beau Carlson, Lynette Randall, Jay and Tammy Minick, Keith Wallace, Gail and TC Conlin ..... the list goes on! Thank you for your encouraging words and prayers. Thank you to the sweet neighbors and members of my parents ward who have brought in meals and checked in daily with our Mom. Thank you to the wonderful nurses and doctors at the U who are always so compassionate and patient with all of us. And thanks to Dads lung donor and their family for making all of this service and compassion possible, and for giving my Dad a second chance at a beautiful life.

Out Of Surgery Now

Dad made it through the surgery just fine and is recovering now.  We'll be able to see him in about an hour or so.  Dr. McKeller came out and explained that he was able to create a small window in his pericardial sac to help drain any fluid build up in the future.  He said that the outer pericardial sac - the shell that holds the heart) actually wasn't as hard as he thought it would be, but that the inner sac, which is actually attached to the heart, almost like an outer skin layer that has blood vessels attached, was actually thicker than he was hoping to find.  This could be a problem because if, in a couple of weeks, Dad starts feeling the same symptoms again (compressed chest, lower body swelling, fatigue) it means that his heart is still constricted, and Dr. McKeller said that trying to surgically remove the inner sac is a much riskier surgery because of the high potential for blood loss.  They have taken samples of the sac which will be evaluated for any signs of disease, TB or fungus (which he said he thinks is highly unlikely) and they said we won't have the results for a month or so.

So, the good news is that Dad made it through the surgery with flying colors, that his new lung is actually doing awesome, and that this new window should help with fluid drainage.  Hopefully that will be enough and he'll be feeling much better within a couple of weeks after recovering from this surgery.  We will all be praying that he continues to feel better and not worse over the coming weeks so he can finally have a chance to enjoy his new lung.  If all goes well, he should be able to go home on Sunday.

Here we go ...

Dads the one in the blue. I'll feel a whole lot better when he's in the red. Coincidence that the color "red" represents the finish line of the surgery? I think not. :)

Twas The Night Before Surgery ...

Since the fluid build up has increased in the last 24 hours, they're just going ahead with the surgery to put a window in his pericardial sac. Surgery should be around 7:30-8am and will last about an hour. If all goes well he should be home by Sunday. The girls and I made it up from St. George just in time to come see him and get some much-needed hugs from Grandpa. We had a little family prayer with him from Annie and we all agreed that we feel really good about tomorrow.

On our way into the all-to-familiar lobby of the hospital tonight we ran into Keith Wallace, one of Dads best friends, as he was just leaving from visiting Dad. And my cute niece from my previous marriage, Lynette - a freshman at the U- had come to visit Dad earlier today which was great - he loves an excuse to hear all about campus life and her plans at the U.

Thanks to all of you for everything - we love you!

Here's the latest ....

Well, unfortunately the fluid around Dad's heart didn't drain completely and as quickly as his doctors would have liked, so the plan as of tonight is that they will remove the chest tube tomorrow morning, then wait 24 hours before they can do another echocardiogram to get a good look at his heart.  From what Dad told me tonight, the doctors will then go ahead and do the more minor of the two surgeries where they will cut a small window in his pericardial sac and insert a small drain that will remain there permanently to allow the fluid build up to drain into his body.  Because of his recent blood clots, his doctors would rather wait to do the more invasive heart surgery to remove the pericardial sac completely when his body has had more time to recover from the blood thinners and such.

So, it looks like he'll be having surgery sometime on Thursday and from there, who knows?  He thinks he'll be going home right away, but I think we need a bit more information from the doctors before we can plan on that.  If I know my dad, he'll do and say anything to get out of there in time to go to the Utah/BYU football game on September 15th.  To be honest, I'm fairly confident there are a couple hundred of his family and friends who love him enough to ban together, bust him out of there and wheel him down to the stadium ourselves!

As I was saying goodbye to him on the phone tonight, he said "I just don't want this to be how my grandkids remember me .... all hooked up to machines lyin' around in a hospital bed.  I've got stuff I need to do with them!"  He's got places to go and people to see, dang-it!  Don't worry Dad - I'm pretty sure when they think of you, years from now, the pictures in their head look a little something more like this ....

Better News Today

Bryan just emailed this update Sunday morning:

Just met with Dr McKellar up at the U who is the Cardiothorasic Surgeon. He looks very hopeful and likes the progress that he sees with Dad at this point. The swelling in legs and abdomen is continuing to go down and is breathing a little easier now. The plan looks like they will pull the drain from his pericardium tomorrow, keep him overnight and repeat the echo. If all goes well then he will go home.

IF, when Dad gets home and he feels like he is "stalling-out" again and not feeling better then they will do the Pericardectomy within the week. All of this depends on HIS symptoms and how he feels. He should be able to walk on treadmill for 20+ minutes without a problem. I really like this guy, he is definitely looking to "NOT" do the procedure unless it will make him feel a ton better. He also mentioned that the risk of this procedure is not very high with Dads condition.

Jake, Josh and Grandpa O :)

Home Is Where The Heart Is

For those of you who haven't heard yet, Dad's been back at University Hospital since Tuesday 8/28/12 because of the increased swelling in his legs that has spread into his abdomen.  It's the reason why he wasn't at the Utes season opener last Thursday - literally being in the hospital is THE ONLY thing that would keep that guy away from a game at Rice Eccles :)   (Warning:  I know I'm going to mess up the medical jargon here when I try to explain what's going on with Dad - especially since I'm here in St. George and haven't heard it first hand from the docs like Mom and Bry and Carter, but  we wanted to get something posted anyway.)

He's been feeling progressivley worse and more fatigued since his blood clots last month.  His transplant team turned him over to the cardio thorasic team at the U to try to figure out what was going on, and after coming in for a CT scan and numerous other tests, the docs found that he had a lot of fluid building up around his heart - inside the pericardial sac that holds the heart.  They were all stumped as to what was causing the fluid build up, but they said that that pressure on the heart is what's been causing his swelling, fatigue, shortness of breath and slow recovery.  He had a right/left heart cath done on Thursday morning where they were able to insert a tube to drain the fluid and also were able to get a picture of what's going on in his heart.

They found that the pericardial sac has hardened up into a shell and either needs to be removed all together, or will have to have a small window cut out of it to prevent future fluid build up. Basically, he has to have heart surgery sometime here in the next week or so. The doctors told us that this is most likely a result of the surgical complications he endured during his lung transplant almost nine months ago.  What was supposed to be a 3-4 hour surgery back on Christmas Eve ended up taking almost 11 hours because his aorta was accidentally knicked and he almost bled out on the table.  Basically, he has to have heart surgery sometime here in the next week or so :(

They're watching him now and are running tests on the fluid that's still draining which will determine how urgent the need for surgery is.  Hopefully it will stop draining altogether and he'll be able to go home for a couple of days before being readmitted for open heart surgery.  His attitude, is of course, awesome and although we're all extremely nervous about how well his frail body can endure a surgery like this, we're also relieved that finally there's an explanation as to why his recovery has been so difficult - especially when his new lung has been doing so well.  I still have questions that will hopefully be answered soon about the effects of having your pericardial sac removed, the effects of heart surgery on his new lung, etc.

We'll keep you posted as soon as we hear anymore news.  A day doesn't go by that we aren't humbled and grateful that he's still here with us and fighting for the life he loves so much.  We love all of you more that words can say and are continuously grateful for your prayers and concern!

Home Sweet Hospital

So just when we started bragging about how great Dad is doing (goes to the gym daily) and how awesome it was that he hasn't had to be re-admitted to the hospital since coming home in early Feb., here we are. Dad came in yesterday for a regularly scheduled broncoscopy and biopsy but his docs weren't able to finish when they noticed his o2 sats kept dipping during the procedure. Long story short, some ultrasounds revealed a blood clot in his calf - part of which had traveled up to his new lung. The good news is that they caught it in time and now have him on meds that will dissolve them and hopefully prevent anymore from appearing. The bad news is that he'll be in the hospital probably til Sunday morning, along with now having to add some injectible meds to his daily pile of meds as well as more frequent visits to the clinic for blood draws.

Needless to say, it's reminded all of us of how fragile his condition still is, despite his positive attitude along with the "oh, I'm fine's" and contagious smile. We'll keep you all posted and continue to be humbled and grateful for your many prayers and financial contributions that have kept him here with us a little longer.

Six Months Out

It has been a little over six months from the Christmas Eve lung transplant.  I definitely consider myself a very lucky man as I am still alive and able to enjoy, among other things, a wonderful 4th of July family reunion with our extended family this week at Draper Park.  They are simply amazing!  What a treat to get together with them all and see their families growing so beautifully.  Not only that, my daughter Jani married Brock Belliston on memorial day weekend in St. George which I was able to attend and participate in the wedding. Priceless!!!  Grand kids are the best.  Without the transplant, I would not have been here.  Yes, I am a lucky man.

I wasn't able to golf with them at Wasatch State Park on the 4th, which is our tradition, or hike, or a few other things, but I am a patient son of gun and know it will come soon.

As to my condition at this point, I tire easily and my breathing is somewhat irregular.  My weight is still possible to pass as a prisoner of war model, BUT - I am breathing on my own and every month I see progress.  I asked my Dr. last week to tell me straight of I was on target at this post operative stage and she said definitely and that she was pleased.  I'll take that.  I undergo another bronkoscopy end of the month to check for any rejection from the lung, but I think it likes me.

Life is good and it all comes down to faith, family, and friends.  Thank you all for being there.  You are all the best!!!

Dwight Osborn (Ozzie)

Gratitude

My Doctors tell me I am right on schedule for which I am very grateful.  It's been four months since surgery and I have come a long way, even though at times it doesn't seem like it.

 By the way, I have been neglectful in not thanking the amazing doctors and nurses at the "U".  They could not be any better.  They become a second family. Dr. Gomez, in surgery, Dr. Cahill, Dr. Ramon, Kelly, Tauna in Clinic,  Laurie Brewster, Molly, Spence in Clinical Trials,  Merico, Rachelle, Bill in therapy, and the kind and caring nurses who cared for me; always with a smile and a ton of patience. I can't say enough positive things about them all.

I am "graduating" from physical therapy this week eliminating my need to travel to the hospital 3-4 times a week which should simplify my life a little.  I plan on continuing therapy at the Treehouse Gymn in Draper where there are a bunch of great people and friends.  I will miss those at the "U" but you can bet I will keep in touch and always look for ways to help others with the disease and try to help in finding a cure.

I tried to see if I could do a light jog yesterday; couldn't even get two steps in and darn near fell over.  I felt like I was on to short stilts with no lift at all. That's O-K because it will come in time with effort.  I am thankful for what I have so far and the time to improve.  Life is good!

When something like this happens, it is very humbling to see how many friends one has.  Literally it brings tears to my eyes when I think about it.  Thanks for being my friend!

On the Road Again

Just got my driving privileges back again. What freedom and how I missed it. Let me tell you it has been some kind of journey. I little more than I bargained for but in the end grateful to still be around and have so many family and friends around who care -- Means Everything.

This is going to be a year long process so I have to take it with patience. Feeling much better and starting to get some energy back. Went from 160 lbs to 123lbs. Suffice it to say, Do I have a dynamite weight loss program you who want one!

Looking forward to spring and can't wait to see you all. You are the best friends a guy could ever have. I owe you all!

Oz

It's The Little Things

Today my dad called me at work and told me that he was parked just outside my office and wondered if he could drop in.  He had just finished a good pulmonary rehab appointment and was on his way to have lunch with his Uncle Ernie so he couldn't stay long.  He's done this many times over the past couple years since I've worked on campus, but today was different.

Before, after he would leave, I would have to go hide in the restroom for a few minutes until the tears subsided.  I remember feeling so helpless and sad at the thought of loosing him soon if we couldn't get him on the transplant list.  Now, after he left today, I again had to slip into the restroom and have a little cry (as I'm sure one of my sweet co-workers did too since she's been following his story.)  But these tears were happy tears.  There were so many, many days when I would come into work after having just seen my dad or talked with his nurses or docs and just felt to down and discouraged.  But not today.  Today my dad has a little bit of his life back, and slowly but surely he'll get the rest of it back too.  He's gained five pounds in the past two weeks and he looks better every day.  He doesn't carry oxygen around with him anymore like he used to right after he got home because he's so much more confident now.  He still is short of breath a lot of the time and has to take his time on the stairs and such, but he gets stronger every day.  Today he told me he even went downstairs yesterday for the first time in a very long time!  He's doing everything he's supposed to do and is not taking one minute of this "second wind" for granted.  I'm seriously so proud of him and inspired by him.

Last Sunday at dinner he started telling me about a funny video he'd seen on tv and started laughing as he was talking.  I had to stop him in the middle of the story and say "Dad?  How cool is this?  Do you know how long its been since I've heard you be able to just sit here and laugh and talk at the same time with no oxygen?"  He smiled and said "you know what?  You're right.  It feels great!" and then continued on with his funny story.

It's the little things. :)

Music To My Ears

While we were over at mom and dad's yesterday, I was telling dad that Halle and her cousin Camryn want to sing a little song from the Disney movie "Tangled" at my wedding in May.

Mandy Moore – I See the Light (From "Tangled")

I told him that I'd love it if, when he feels up to it, he could start practicing and accompany them on his guitar.  He, of course, wanted to start right away, and I can't tell you how wonderful it was to hear my dad play again. It's probably been three months since he's picked up his guitar, and I'll bet that's the longest he's gone without playing it for almost 50 years. As long as I can hear my dad playing that guitar, I know everything's going to be fine.

Thank you to his donor, the donor's family, his amazing doctors and nurses, all of the sweet people in his ward and all of our neighbors and family friends who have helped both financially and through their service. Thank you for giving that guitar another chance to be played.

Bosom Buddies

I forgot to post this picture I took yesterday when we ran into Diane (the recipient of the donor's other lung) while we were waiting for dad's appt. in Clinic C. They see each other often now at pulmonary rehab and clinical appointments.

Diane seemed to be doing well, but the past couple of days Dads been struggling with really low blood pressure, a significant weight loss (now down to 120 lbs.) and struggling to get into a normal breathing rhythm. Every little thing just leaves him completely winded. His docs think its just his low body weight and his body and mind having to re-learn how to breath normally after so many years living with IPF.

He'll most likely have another broncoscopy next week where they will finally be able to biopsy the new lung. His pharmacist also tweaked some medications a bit, which should help. We'll keep you all posted and appreciate your continued prayers and support.

Look what I found?

I took this video on Christmas Eve and forgot I had it on my phone. It was about 11pm and I had just returned from dad's surgery (I had been there since 7:30am and was just now getting to see my girls and do something Christmasy for Christmas Eve.) They were so worried about their Grandpa and wanted to be with him, and this book did just the trick. It was one of those Hallmark books that we had him record the Christmas before.

48 Hours Without The o2 Cannula!

I just got off the phone with Dad and he sounded great - still winded, but great!  He said it's been almost 48 hours since he's had to use the oxygen cannula - he didn't even take it with him to his pulmonary rehab appt. yesterday!  This is such a huge step for him physically and mentally and I am so, so proud of him.  Last week he gained four pounds (okay, he had shoes on so we'll call it three) and he's been walking every day on the treadmill that Bryan set up for him in their front room.  Everything is still a bit of a struggle for him and leaves him feeling completely wiped out - things like putting on his shoes, reading a book, talking for more than a few minutes, but from what we hear  from the doctors and other patients it's perfectly normal - frustrating, but normal.  As he reminded me today, it's a slow process that's literally going to take about a year before he feels 100% normal again.

As difficult as this whole process has been, it never escapes us how much better off he is now than he was three months ago.  Little things like enjoying family Sunday dinners together at home and sleeping in his own bed have become big, wonderful things.  Today he has hope, and a bright future ahead of him and was finally able to kiss that oxygen cannula goodbye - hopefully forever!

Home Sweet Home

It's been one week since Dad came home from the hospital and he's doing great. Even though he no longer "lives" there, he still has to be driven to University Hospital at least three times a week for blood tests, X-rays, clinic visits with his transplant team and pulmonary rehab, all of which usually last from 8am until noon - 1pm. The good news is that he's been doing pretty well at night and we've stopped needing someone else to sleepover as a precaution. He requires an IV anti-fungal medication every day at 4pm at home that Amy has now been trained to help him with since she lives so close (thank you Amy!) Bryan and Janalyn brought their treadmill all the way up from St. George last week and set it up in the family room to help with his recovery. They've done everything they possibly can to help out even though they live so far away. I seriously have the best brothers and sisters in law in the world!

He's still on 2-3 liters of oxygen until this neumo (air bubble) dissipates and he's able to breathe normally. The plethora of pills and medications that he's required to take every morning and night is mind boggling. Preparing his pill boxes for the week with over 16 different medications is a little nerve wracking when you think about how critical each one is to his survival.

I don't think he realized that he was free to remove the last of the bandages earlier this week and finally be able to take a real shower. Mom and I helped him remove the bandages tonight and when I saw him there with all the scars on the side of his chest, I got a lump in my throat because of how incredibly proud I am of him and how grateful I am to the donor and their family who's gift of life is living and breathing inside my sweet dad.

Before my girls and I left tonight, he wanted to say family prayers with us. His constant smile is back now. His color is great. He sounded so good while saying his prayer - so thoughtful of others, so grateful for his blessings, so normal in his breathing and speaking. I know it sounds silly, but I notice little things like that now. We all do. Every breath ..... every "whew" .... and even every silence in conversation that used to be filled with painful, hacking coughing fits. We notice it all, and we are grateful. So very grateful :)

Almost to the finish line ...

We're just waiting for the final papers and a wheelchair and then he's OUT OF HERE! This is the first time he's been able to wear real clothes in over 6 weeks.

Stay tuned for a picture of him crossing the finish line of his first ultra, ULTRA marathon :)

Knock On Wood

So the latest from the doctors is that if, IF everything continues to go well that Dad will be heading home this Sunday in time to watch the Super Bowl!  Although his daily X-rays continue to show a small amount of fluid or air around his lung which is what is still causing him to still be short of breath, the doctors say that as long as they see it get smaller and not bigger, then it will most likely be absorbed by the body on its own.  The doctors have asked to meet with our family Sunday morning to go over the long list of medications and care that he'll need in the coming weeks and months.

He's so excited and we all are too, and at the same time we're all a bit nervous about caring for him at home.  He'll need to be driven to appointments 3x/week to University Hospital for the next month or so, and maybe more for the administration of an IV medication that he'll need daily for the next five weeks.  Any volunteers from his neighborhood and ward to help drive him to and from these appointments would be so helpful.  We also may need to have some of you family and close friends volunteer to come by during the day and also some of you to spend the night in their guest room - just so we know there's someone else there to help in an emergency so my mom doesn't feel so overwhelmed.  His diet and nutrition will also continue to be important in the success of his recovery, so all of you good cooks out there, now's your chance to shine!  We'll post a list soon of the foods and snacks that sound good to him and are helpful to his recovery.

We'll keep everyone posted on how he does over the next day or so.  Today marks his six week anniversary of living in this hospital 24/7.  If this actually does happen and he ACTUALLY gets to finally leave the hospital ......I think we may need to hire a marching band or a fireworks show or something. 

Seriously, knock on wood ....... please!

Dang!

Just spoke with Dad. He just got back from another X-ray which they're still looking at. He was discouraged because they told him this morning that they did find more fluid from last nights X-ray. He's on 3 liters now, tired from walking, taking pills etc. and said he does feel like its a little harder to breathe. He wants to rest for a few hours with no phone calls or visitors, so I told him I'd update everyone and check in on him in a couple of hours.

Chest tube out ... hopefully forever!

The last couple of days have been a bit confusing and frustrating, to say the least. I think we've all started to feel a little numb to all of the doctor-speak and have realized that they don't have all the answers either, but they care about his recovery just as much as we do.

They put a water seal on the chest tube, then they clamped it completely, then X-rays showed another air bubble, so they unclamped it and then more fluid came out and dad wasn't feeling right. Almost as soon as I left the hospital this afternoon feeling frustrated again, I had just finished updating Bryan on what little information I had when Dad called me an hour later and said the doctors had come in and decided to remove the tube completely. Whaaat???

Honestly, I can't keep up anymore with what's happening and why, all I know is that Carter was just with him tonight and said Dad was feeling great - even better than he was earlier. I'm sure the nurses are watching him closely since the only other time they pulled out the last chest tube his lung collapsed later that night. (I was there when it happened. Not fun. Not fun at all.)

So please keep him in your thoughts and prayers. The thought of him having to have that chest tube put back in again and having to stay here past the six week mark is just, well ..... let's just not go there. Not gonna happen. Happy thoughts and positive vibes from here on out :)

And on that note, I'll share some pictures of my 4th grade twins' science fair project. Maybe someday one of them will find a cure for IPF :)

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 :)