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 :)

Entering Gad Valley

Dad was cleared to be moved up to the 5th floor transplant unit this afternoon - totally bypassed the intermediate ICU which is GREAT news! He's doing his best to try to swallow solid food but his throat has quite a scar from removing the large vent tube. As he was forcing himself to eat another bite of mashed potatoes, I said "just think of this as the biggest marathon of your life, Dad. Pick a spot up ahead, set a goal, and don't focus on anything else 'til you get there." He laughed and said "then right now I must be in the St. George Marathon entering Gad Valley. Definitely looking forward to getting to Diamond Valley." He's my hero :)

Pray for Diane

Please keep Diane Atwood in your thoughts and prayers.  She's the recipient of the left lung (my Dad got the right) and apparently she has to go back into surgery because of issues with the lower part of her new lung. She was doing so well?  Scary.