Monday, Monday...

Monday Morning

Restless night here- Bryce had a hard time getting comfortable. He wasn't in pain but just couldn't adjust in his bed the way he'd like. Nurses were constantly in and out, so not a ton of nighttime sleep was had by either of us.

Transplant team  came for morning rounds. Said kidney looks good, his incision site looks good. It's just going to take some time for it to work- which we knew. Said they're gonna keep giving him lots of fluids to stimulate the kidney and make it produce urine. He has dialysis sometime today because his potassium is 5.3, we just wait to see when they come get him so we don't know what time yet. They won't pull fluid off. Just clean his blood to get his potassium down. Doc said his catheter has to stay in for at least 5 days, but he can go home with that and have it removed at his clinic appt on Thursday or Monday. Said if we can get his bowels moving and he can start tolerating food and he is walking enough then he should be able to come home on Wednesday. Dialysis won't be scheduled, it will just be at an as-needed basis depending on his daily blood work the next couple weeks. If after a couple weeks it's still not giving us adequate function and urine output then they might biopsy the kidney. He sounded like that was a last resort though and that they were confident that could be avoided. He reminded us to be patient and that it might take a while. So the lesson in patience continues :)

Monday afternoon

Just a chill afternoon here. They took him off his self-controlled pain medicine and he is on oxycodone every 4 hours. He was a little nervous that it wouldn't control his pain, but the nurse said if he starts to have some pain and it's not quite time for his next dose yet, they have a little “breakthrough” dose they can give him to tide him over. That made him feel a bit calmer. 

He took another good long walk around the floor and sat up in the chair to drink some lunch and watch tv for a couple hours. 

Dialysis was scheduled for tomorrow, not today. So that will be in the morning. 

Just had a visit from our Home Teacher and he gave Bryce a nice blessing. 

He is producing a very small amount of urine and it's probably mostly blood- but it's something! It's encouraging. Docs said if it's not making some urine by Wednesday afternoon they will keep us til Thursday and do a biopsy to make sure all is good. That sounded like a last resort so we are praying for urine! Who knew I would be so anxious for a person to pee?!

Traction

Sunday

Saturday night/early Sunday morning was restless. They came in often for vitals, blood sugar, medicine doses, etc. not much sleep was had. He got up and went for a walk around the floor- less than 12 hours after major surgery. He is such a champ! 

We woke for the day and he was taken down to dialysis soon after. During that time I got a good long nap, and was able to shower, get ready for the day and grab a quick breakfast at the hospital cafeteria. Around 2 o clock Bryce’s parents arrived and we visited for a little while until he got back from dialysis at about 3. They were only able to take off one liter of fluid because if they took off more his blood pressure would drop but they cleaned his blood and got his potassium and creatinine down (pre-treatment potassium was 6.3 and creatinine was 9.4). He’s still not producing urine but the doctors don’t seem overly concerned.

They had another ultrasound just to make sure blood was flowing and all was connected in the kidney as it should be. They said everything looked great. They mentioned if it’s not giving any urine output in the next few days then they might order a biopsy of the kidney, but would take it one day at a time.

Moff also arrived in the afternoon and we had a good time visiting, playing games and just spending time together. Dave Marriott brought dinner for all of us and our kids to the hospital. They took our kids Saturday-Sunday even though Abby was due with their 5th on Saturday! They are amazing! The kids loved having a short visit with Daddy and kept asking “How are you feeling? Is the new kidney in you? Is it working yet?” They are anxious for what this change will mean, even though they don’t know what that will look like.

Carol left about 7:30 and got the kids home and to bed. Ron left at the same time headed for home. Moff stayed for a while longer and we finished watching the Closing Ceremonies for the Olympics while Bryce dozed. 

It was definitely a bright spot to see our kids and reminded us of why we are doing this. And how much better things will be in a year. Sometimes, in the middle of the storm you can forget what a sunny day looks like. Or when you get a cold or stuffy nose you forget what it felt like to breathe unrestricted thru your nose. These hard times help us appreciate the good- “Opposition in all things.” When I was going thru some particularly dark days that stretched into months during my teenage years, I had my friend Netty tell me “Someday this will all be so distant a memory it will feel like a movie you saw. Or something you read in a book. It won’t feel like your life.” She was right! My life got so good that looking back on those years I don’t even recognize the person that I was. I think that’s because I used those experiences as opportunities to learn and grow. I used them as the heavy load that gave me the traction to move ahead and change my life. 

I fully expect this experience to be the same. That it will change our lives for the better so much that the hard days will be a distant memory. We just have to keep pushing thru.

This clip is always a good reminder to me when my load seems heavy.

https://www.mormonchannel.org/watch/series/mormon-messages/bearing-our-burdens-with-hope

Transplant Day!!

Saturday

It was a restless night of sleep but we made it thru. Bryce woke early and kissed me goodbye. He went into the kids room to see if any of them were awake before he left. He found Pierce awake in his bed and said “Pierce, I’m heading up to Salt Lake to the hospital. I think they’re gonna have a new kidney for me.” 

Pierce said in a quiet but excited voice “Whoa Dad. Things are really going to change!” Our kids were so young when this all started (Pierce was 3, Jane was 14 months and Owen was 6 weeks) that dialysis for Daddy is all they have ever known. This will be a completely new way of life and such a huge change for us in so many ways.

Bryce has a PRA (Panel Reactive Antibody) number of 100. This is a number they use to determine compatibility with potential donors. Because he has so many antibodies and antigens in his blood, this means his body will fight and reject the majority of people’s kidneys and/or blood. Less than 1% of the entire earths population is a compatible match. It’s been told to us this is the major reason why it has taken them so long to find a potential donor. Waiting for just such a donor match in the US to die, and then also be healthy enough and meet the criteria to donate was making it nearly impossible. I always joked about how ironic this was because Bryce gets along with EVERYONE! How crazy that his body didn’t feel the same.

Back in January Bryce received a Priesthood blessing from his Dad and brothers. His Dad said “When this transplant happens it will be an absolute miracle.” And we have always felt that would be true. Saturday morning as Bryce turned on the car to head to the hospital, the song on the radio was “All I Need Is A Miracle”. He said that got him excited and from that point on he felt like it was going to work and be the miracle we had waited and fasted and prayed for.

He arrived to the hospital and met Moff. They went to his room and met with some nurses, had an EKG, EEG and a chest X-ray to make sure his heart was up to surgery, anesthesia and recovery. All was a go on our end. The last step was waiting for the kidney to arrive so they could have a chance to look at it and make sure all was in working order.

They visited with the nephrologist and the surgeon and were given some important information about the kidney. We don’t know much about the donor at all but here is what we do know:

-This donor was what they call a DCD- deceased cardiac donor. Brain death patients can have their organs harvested while on life support (with family consent of course) so the organs continue to have blood supply.

With a cardiac death, they withdraw care and wait for the patient to pass. This can mean that some of the organs go minutes without blood flow. Of all the organs the kidney rebounds from this the best. This kidney was without blood for 15-16 minutes. Because of it being without blood for several minutes however, this can sometimes make its function slow on the uptake after transplant. So he may still need dialysis for a couple weeks to couple months until it starts kicking in full force. 

-The donor was also Hepatitis B positive meaning they had the bacteria and had been in treatment for it at some point. Bryce has been inoculated so they weren’t overly concerned about it. Plus Hep B is pretty easy to treat and manage. A small concern compared to finding a compatible match for someone as difficult as Bryce. He will take a medication for about 6 months that should keep him safe from any issues. But like I said it’s easy to treat and manage. So should we need to change treatment for it later on that is very manageable. 

Both of those were small risks to take because this was a 100% match for Bryce. The doctors and surgeons could not believe we got such a perfect match for someone with a 100 PRA! Almost unheard of. This gave us confidence to proceed and move forward. The kidney came from Massachusetts so there was some waiting time for it to arrive. 

They prepped him for surgery. I was finishing up the baby shower at home and getting things packed for the kids to stay in Salt Lake with some friends overnight. But Moff was SO good about keeping me informed every step of the way and even recording the whole conversations with the doctors- she was amazing! And invaluable. I was so so thankful she was there.

As JoDee was telling the boys it was time to leave and said “Let’s go guys! Its Transplant Day!” Owen responded so seriously “But JoDee, somebody that someone loved died so that we could have this kidney. So it’s also a sad day.” I was proud of him for remembering what we had talked about. It’s not a sad thing for us and I don’t want to make them feel guilty or that they can’t be happy. I just want them to be aware of others sacrifices for us so they are grateful and to help them develop compassion.

I arrived about 1:15, they took him back at 1. Moff and I had the waiting room almost entirely to ourselves. We got a call from the OR when surgery started that he fell asleep just fine and the kidney looked pink and had good color so they anticipated it going well. 

Around 5:30, the surgeon Dr. Fujita came out and visited with us. He said surgery-wise it went great and there were no complications. The kidney was a good pink color. A little small but that’s not a problem as it will grow in size to accommodate Bryce’s needs. He said their concern now is getting it to “wake up” and start working. He mentioned again that it might take a few weeks of dialysis and some work to get it up and running like it should. The way he said it made me think it would be a gradual thing- that he would go from needing dialysis 3 times a week to maybe twice and then just once a week. We will see where it goes from here. 

After he left Moff and I knelt down and with tears streaming down our cheeks she offered a sweet, sincere prayer of gratitude. It was a very tender experience. We collected our things from the waiting room and headed up to Bryce’s hospital room to wait for him.

The nurses in post-op called up at about 6:30 and said they were having a hard time keeping his oxygen up while also giving him enough pain medicine to keep him comfortable. They asked for his CPAP mask, hoping that would help him breathe better when he dozed off. At 6:45 the post-op/recovery nurse called again and said he was ready to go but they were going to wait to bring him up until after shift change at 7 so that it would cut down on some of the craziness.

JoDee arrived with dinner at about 7 and we spent some time visiting with her. She needed to get on the road back to Clifton but wanted to wait and see Bryce if she could. At about 7:40 they brought him in. He was in rough shape- a LOT of pain because they had to back off the dilaudid to get him to wake up and breathe well. His color was good however and while I know he didn’t FEEL good, he looked pretty good. I was so glad it was over and we were on this side of it, but he was feeling too much pain to appreciate much of anything other than a morphine drip!

His nurse came in and we were able to get him going on his patient controlled dilaudid. It took a little while to get it under control but he hung in there. He was super thirsty but couldn’t have anything to drink just yet so he had to get his water from those little sponge swans but as usual, he was a champ. He was able to drink some water when he took pills, but only then.

His catheter bag did have some blue liquid in it- methalyne blue which they used in surgery to make sure all the veins and lines were closed and nothing was leaking. We laughed that he was a true Cougar fan- he didn’t bleed blue but he DID pee blue!

JoDee hung around for a little while, Bryce sat on the edge of his bed with his feet dangling to the floor for a little bit, but mostly rested in bed. He started to perk up after a couple hours and we played a quick round of Heads Up! because he didn’t want to doze because then he wouldn’t stay on top of his pain medicine and he’d wake up really hurting. So it was nice to have JoDee and Moff here as a distraction for a while. We settled in for a long night- we knew they would be coming in often to check vitals and do blood work and all the other things they have to do. 

I pray we never forget this experience; That we use it as a reminder of how fragile life is and how it can change at the drop of a hat. That we should be grateful for our good health when we have it. That we cherish the time we have been given with those we love. That we remember the help and support of our incredible village that have held our hands, lifted our heads and walked with us thru the dark days and the bright. I pray we will have the chance to pay it forward and give back to those that have helped us and those who maybe we don’t even know yet, but who will one day need our help. 

“Because I have been given much, I too must give.”

The Next Big Step

Where do I even start? Goodness, so much has happened in the last 36 hours! As with most miracles, it started long before we even realized it was happening.

Friday the 23rd started like any other Friday- Pierce off to school, Bryce went in to dialysis. He called me about 12 and said “Ashley (our transplant co-ordinator’s assistant) called and said they might have a kidney for me. They have to wait for the bloodwork to arrive. She said they should have more info for us in about 4 hours.”

Deep breath. Hold the excitement. Okay. So we wait. And make plans for a series of events that might not happen. Sounds familiar. We sent info on to our families and a few close friends to have on alert in case we heard anything.

At 1:30 I went to get Pierce from school and when he got in the car I explained to the kids that we got a call about a maybe kidney for Daddy. They all got so excited. In my efforts to temper their expectations I reminded them it was just a maybe and that it might not be a match for Bryce which means it will go to someone else. I then explained that this kidney was coming from someone who had died; We didn’t know if it was a man or a woman, a mom or Dad or brother or Aunt. I asked that in our prayers we would remember the family and loved ones of this donor. It was one of the most sweet and tender moments of my life to listen to my children pray for blessings of comfort, love, and peace for these complete strangers that were making such a selfless sacrifice and changing our lives. Their simple and complete faith gave me strength and so much peace.

I spent the afternoon trying not to think about it and keep myself busy. I did okay for a little while until he arrived home around 4 and said Ashley had called him back and said they still didn’t know more. The blood work hasn’t arrived yet and was coming from out of state. She said shift change would switch to the weekend on-call nurse at 6 and we should get a call about then. We started to go a little stir crazy so we took the kids out to dinner at Blaze Pizza to try and distract us before coming home and watching some Olympics.

By 9 o clock he called them and left a message for the on-call nurse to call us back. At 9:20 she called and said everything on the initial blood work looked good. He was given instructions to go to the IMC in Murray at 8am the next morning for final blood work and some other last step tests.

I was hosting a baby shower the following morning at 11 and since we were afraid to get our hopes up and plan on it too definitely, we decided I would stay and do the shower while Bryce attended his last minute testing and would have Moff (his sister) with him. We were told if he was given he green light for the transplant then the surgery would take place later in the afternoon. We felt confident this would allow me to fulfill my obligation of the baby shower and still be able to be with Bryce should the surgery take place. Since we only have one car I was planning to ride the train up with the kids to the hospital (the train goes right to it) but at the insistence of JoDee (our friend from Bryce’s hometown who was in Provo visiting) she said she would come and get the boys during the shower and then take us all up to Salt Lake. 

It was hard- I wish we had known from the beginning that it was going to work out because then we could have enjoyed it more. Instead we had to lower our expectations at every step in case it didn’t pan out. We’ve spent so much of this time worrying that it won’t and bracing ourselves for the worst that it’s robbed us of a little bit of joy. But such is life sometimes. I’m sure there’s a lesson and analogy in there somewhere but I can’t connect the dots right now. Regardless of it having a little less happiness than we want, we are still immeasurably grateful. So many hundreds of little miracles and small pieces had to fall into place for things to work out the way they have. We know it’s not just a coincidence and no one could convince us otherwise.

For today I’ll end with one of my favorite quotes from Elder Jeffrey R. Holland