Clinic Visits

I know a lot of you have been wanting an update. I haven't had as much time to post because I'm not in a hospital all day ;) And there hasn't been much to post- at this point there isn't a whole lot that changes from day-to-day.

We've had 3 clinic visits since we were discharged- Monday and Thursday of last week and then again this morning. Everything looks great. There's a lot of numbers they still have to watch for in his blood work to make sure his levels of medication stay right within the necessary range. His urine output is slowly improving- last week he was at about 100mL a day. They put him on a water pill over the weekend (he takes them on his non-dialysis days) and they've gotten him up to almost 300mL a day now. Yay! They told us they had 2 patients that had a DCD kidney transplant 2 weeks before Bryce and both of theirs started picking up to making almost 2 liters of urine by week 3 and 4. So. We are hopeful. It's going to take his bladder some time to get used to working again too. It's a muscle that hasn't been used for 4 years, so it's weak and small, can't hold a lot yet. But it will.

On Thursday they did an ultrasound of the kidney. There was some fluid around his incision just under the skin that isn't a concern. The kidney looks great (like a little PacMan actually). It's getting good blood flow and there is no fluid around the kidney itself. Bryce asked him if we should worry. These poor doctors, I'm sure they spend half their life telling their patients to relax and be patient. Luckily, we had Dr. Anand so he was super patient as always. He said they have done every test to determine that everything is going as it should. They did a biopsy and there is no rejection. They did a blood compatibility test after all his transfusions to make sure his antibodies were still lining up. They did multiple ultrasounds to check blood flow. They're monitoring his medication levels. His urine output is starting to pick up like it should. Clinically, there is absolutely no reason to expect this kidney will not work. In 99% of cases such as this the kidney opens up and everything is great.

We asked for clarification for what they mean when they say the kidney needs to "wake up" or "open up". He said the filtering parts of the kidney, called the nephrons, are similar to our brain cells. They get their oxygen to function from the blood flow. When the donor passed away and the blood flow to the kidney was cut off for 15-16 minutes, the nephrons died. The good news is they can regenerate, it just takes some time. What we are specifically waiting for is the nephrons to grow back and start filtering! The first sign of kidney function improving will be increased urine output, the filtering of the blood will follow a few days later.

For now he is still dialyzing Monday, Wednesday, Friday afternoons. He is having more energy and less pain (although still some), and working on being able to sleep on his side. He's feeling well enough he might even try to go to work for a few half days this week to stay on top of things and not use ALL his vacation time. We are hopeful this week will be the last dialysis EVER! Or at the very least for 10-15 years.

 Dozing while we wait for the doctor

 

 Just some good, old snuggle time

 

Contentment

Saturday

Doing good today. They didn't get his JP drain (the drain he had coming out from his incision) out yesterday, so they took it out this morning. He said it wasn't as painful as he expected. He's dialyzing now. We'll go home when he finishes! 

The next few weeks will still be crazy. He has appts where they do blood work and monitor his medication and other levels on Mondays and Thursdays at the hospital in Salt Lake. Then he will have dialysis MWF in Provo in the afternoon until the kidney starts kicking in. So, we'll be back to IMC a LOT. And still have lots of schedule craziness. But that's okay. We have a working kidney! And after that everything else is just peanuts.

The weekend on-call nephrologist Dr. Srinivas came by. He said all the things we know- no rejection, antibodies look good, kidney was a great match and will take a while to wake up. He said they discovered some lesions on his pelvis in the CT scan- he was not worried about them. They could very well be calcium or other mineral deposits left from being on dialysis for so long. One of the (many) things your kidney does is control the levels of a lot of vitamins and minerals in your body. With that function being disrupted it’s likely that’s what caused the lesions/mineral build-up. He’s going to order more blood work to be drawn before we leave today. We will find out the results either on Monday at our clinic appt or Tuesday if they take til then to come back. Bryce asked what else could cause it. He said there was absolutely no cause for alarm- they’re just being thorough as a precaution. It is most likely nothing to worry about. The important thing was getting a perfect match, working kidney! He was very excited about that and said “No matter what the blood work ends up telling us, we will have a solution for it. That working kidney is the most important thing right now.” That was reassuring. 

We waited around for a while for the nurses to get everything in order for us to leave. Anyone who has ever been through the hospital discharge process will be able to relate...everything takes twice as long as it really should. Moff came for a little visit and it was good to see her. I think she enjoyed seeing Bryce doing a bit better than the last time she saw him (on day 2). The pills and med schedule is daunting. I try to remind myself that I felt that way about home dialysis and eventually we got the hang of it that we could literally do it in our sleep. A lot of the meds are familiar, he was on several of them when he had his last transplant.

It was so good to get home and walk in the door. The kids were so excited to see him- there really is nothing like being back together again after a prolonged separation. It always makes me appreciate even the most mundane days at home all together. Bryce's brother Brad came for a visit after we got home in the evening. He's always fun to be around and perked Bryce up a bit too. Our neighbors brought us a delicious dinner- which Bryce actually had an appetite for and enjoyed. He ate more than he had the whole rest of the week combined. 

Bryce was able to take a shower that night before we went to bed- it is quite the production though! I have to help with a lot of it and he is exhausted by the time he is done. We have to clean and redress his incision and drain site and then put his band around his waist to help it all stay tight and flat while it heals for the next 6 weeks. We laid in bed and watched some DVR, enjoyed being under our own roof. With our own kids. In our own bed. While the snow fell outside. It was a pretty content moment, one I hope I always remember.

Dialyzing on our last day

One weeks worth of medications

Daily Morning meds. He takes a few less for his evening round, but not many. 

Hopefully in 6 months we will be down to half this many.

In bed at home. This bed and this guy are two of my FAVORITE things.

The Last Night

Little disheartening, looks like we will be discharged tomorrow night (most likely after dialysis) and not today 😕

Transplant team came by for morning rounds. Said they're going to take his JP drain (little drain thing from his incision site) out later today. It's giving him some pain by his nerves so they're hoping it'll help once they get it out.

He is making more urine-yay! Doctors were really encouraged by both results they got yesterday. Biopsy said no rejection. And another test they did that compares the antibodies/antigens (just to make sure he hasn't created more with all the blood transfusions he's had) was great! They haven't changed since transplant so that is awesome. They were positive, so we're trying to follow suit even though we really wanted to be out of here today.

He's working on his appetite- having some watermelon (as my Grandma Cluff always said "Watermelon has lots of vitamin Pee!") and some honey nut Cheerios for breakfast.

We've had visits from the dietician to talk about things that he can/can't eat now, things he needs to watch out for and be more vigilant about (cold deli meat, sushi, grapefruit/juice, pomegranates/juice, etc) because of his suppressed immune system and meds he takes. Then his post-transplant coordinator came and went thru the lists of appointments, labs, med schedule, clinic visits, lifting restrictions, drinking enough water, etc. The usual stuff. We will also have a meeting with the pharmacist later today to go over meds, schedule, side effects, get our tracking info and 30-day supply: all that kind of stuff.

Should be no needle pokes today, which he is very happy about!

In the afternoon Bryce’s Mom came to the hospital with the kids for a short little visit. It was so good for them to see him and he was really happy to see their faces too. Gosh, we missed our kids! I went back down to Provo, I had tickets to go to the Fairy Tea Party at the Provo Library. It was so fun! It felt so good to get out of the hospital and spend some fun quality time with my Janie. We went with her BFF from preschool and her Mom. I’m so happy Jane made such a good little friend!

While I was gone, Bryce had a couple visits from friends. One from our friend Neal. He said they had a good visit. Neal showed him a video that gave him his first real laugh he’d had post-surgery. It was badly needed and we really appreciated it. Then his buddy from high school, Jared Beutler and his girlfriend and they had a nice visit too. They were still there just as I arrived so I was able to see them for a few minutes.

This experience has reiterated to me how amazing even the smallest act of kindness and service can mean to someone. A text. A visit. A note in the mail. Cookies or treats. A box of Cheez-it’s made me cry this week you guys. And while I DO love me some Cheez-it’s, that’s not what this was about. The love that others express in simple, small, everyday moments can be the difference in a dark time. The kindness of SO many in SO many different ways the last 4 years, but the last week especially, has made all the difference.

Taking the Test

Thursday Morning

Well, I slept great last night (2 sleeping pills will do that!) but Bryce not so much. They told us they wouldn't come in unnecessarily but that went to pot pretty fast. 

They came in at 4 to draw labs. Since they took his central line out they had to poke him for them. Then they came in at 7, gave him some more meds and poked him again. At 8 they came in and hung a bag of blood to transfuse (which was never explained and we weren't given the chance to refuse. Not that we would have, we just would have waited until he woke up so he could get some more sleep!) so they had to poke him for that. At 9 they came in and poked him AGAIN- poking one vein 3 times before it blew and they had to use another spot entirely. Since he can't be poked at all on his right arm due to his fistula, all needles, IV's, blood pressure, and sticks have to happen on his left arm. He was quite the pin cushion and NOT happy about it. They need to be more careful about only sticking veins they know will work! 

I slept til 11 and woke up in Mama Bear mode. I asked his aid why they had to stick him so many times. I guess the doc came in early and they wanted to get on top of his numbers before his biopsy, hence the first blood draw. Then his IV they put in yesterday blew so they had to put another one in, hence the second visit. They drew blood even though the nurse told them to wait since she was coming in to draw labs at 8. I asked the nurse why they gave him the transfusion without the option to refuse it, or wait! They always have in times past. And he had a transfusion yesterday and one the day before so were his numbers so bad he had to have a third?! And if they were they needed to look at a bleeding issue because he should not be that low still after 2 transfusions. She said they weren't bad, his hemoglobin was 7.1 before the transfusion today. That's the highest it's been in months! Plus he's due for dialysis which means his blood is a little watered down and it's most likely even higher than that! She said they just like to do it before biopsy in case there is a bleeding issue it helps them stay on top of it. I told her none of that was explained to us in allll our conversations about biopsy. Especially because the biopsy was supposed to happen first thing this morning followed by dialysis. Its now almost noon- no biopsy still. She has an IV med that takes 20 minutes to infuse and is supposed to be given 30 minutes before biopsy. Ultrasound just called to say they're coming for the biopsy, so she is hanging the bag as we speak.

I was not happy, and I let her know we need to know what they're doing each time they come in. She said she would try to do better. She kept her explanation brief because she wanted to let us sleep, which I can appreciate. But he wasn't sleeping anyway so...

He is mad and fighting to get out of here. Which as we all know is a sign that he really is feeling better. Hoping for discharge tomorrow. Doctors still haven't come in for morning rounds, I'd imagine we might not see them until after his biopsy but I don't know.

Our nurse told us she had a patient here several months ago that was in the same spot- kidney hasn't woken up by the time she left the hospital. Said she went in one morning to go to the bathroom and it was like someone had turned the fire hose on. So we're still optimistic. 

Thursday Afternoon

The surgeon (Dr. Fujita) said on his rounds this afternoon that the biopsy is to determine if it's just taking a while to wake up or if it's rejection. He said "Either way, we have a solution. If it's rejection, we treat that with meds. If it's just taking a while to wake up, we wait and give it some time." He made me feel confident that whichever it is, they will know and be on top of it. It's been weird that the nephrologist and the surgeon have been better about communicating this time around than the nurse we've had today. It's usually the other way around at the hospital in Provo.

The nephrologist (Dr. Anand who we really really like!) came in after Bryce left for his biopsy and I talked to him for a minute. He said after biopsy they would do dialysis here in the room and give him another transfusion. I said "Another one? He had one two days ago, one yesterday and one this morning? Why does he need so much blood?" He was unaware that Bryce had one this morning prior to biopsy. It must have been the surgeon that ordered it and not him. Anyway, he looked and said there was nothing about it in his chart. I said "Well, I didn't SEE him get the transfusion, but he and the nurse both told me he got some." He said he'd look into it and get back to me. For clarification from Dr. Anand- this morning they gave him platelets and plasma, not full blood. When he came in for transplant his hemoglobin was 8.7. After transplant it went down to 6.3, then transfusion/dialysis, then 6.7. After second transfusion it went to 7.3. This morning before plasma it was 7.1, they think most of that drop was dilution because he needs to dialyze and so the fluid waters down his blood basically. I asked if he really needed a third transfusion. Not that we are against it, I just want to know if there's something else going on. He said it's not at a level where it's cause for concern but more blood will help him feel better, because while he's at 7-point-something he IS still low. More blood will give better supply to the kidney, wake it up and stimulate it better/faster. Give him more energy to walk and eat and be more active which will all help with recovery, healing and the kidney starting to work. This is why I love Dr. Anand. He never gets defensive or frustrated and will answer my questions endlessly and explain it so we can understand. He is excellent.

Bryce is still down having his biopsy. When that is done he is coming back to his room and they will dialyze him there and give him a full blood transfusion. 

Phew! That was a lot. Hope it made sense!

Bryce’s Dad shared some thoughts with us today, one of which was “I love life but sometimes tests are hard.” It’s true! Tests are hard. In school I was a horrible test taker. I studied. I knew the answers. I paid attention in class. Something about having to remember everything ALL AT THE SAME TIME stressed me out. If the test was timed: psh forget about it. I’ll write the big, fat, red “F” on the front myself. I had/have pretty intense performance anxiety. 

But...

This life is a test and we know that. A test to prove if we will be true and faithful, keep our covenants and be worthy to live with God again. Tests are hard. This has been a test. I wouldn’t say there’s been much of anything about this experience that has been easy. 

But you know what makes the test easier? If you do the homework and pay attention in class. The anxiety about the test decreases. Your faith in yourself and the time you spent studying grows. You feel more confident and not only able to pass the test, but able to remember the test material long after the actual taking of the test has passed! It should be noted that you can PASS a test without a perfect score. Just because we pass the test doesn’t mean we’re perfect. Or that we know everything. But we knew enough to show the teacher that we understood it and were ready for more. 

The great thing about the Gospel and this test is that we don’t have to know ALL THE STUFF RIGHT NOW. It starts small. And only grows as fast as we want it to. We aren’t forced to learn things we aren’t ready for, because if we were then no real learning would happen. That’s strictly memorization that disappears when the test is over. 

So remember that, when the test feels hard. If you don’t have the answers, go study. Do your homework. Pay attention in class. You might be surprised how much you learn and how ready you are for the test.

See What He Sees

Wednesday

We spent the majority of the day yesterday (Tuesday) waiting for dialysis. It was going to happen at noon. Then 1. Then 2. Then 3. They finally came at 4, he finished about 8:40. Then he had to have his IV treatment that takes 6 hours, so that finished at 3am. It was a frustrating day but his mood was slightly better in the evening for a bit but then he got agitated as we headed to bed.

Things took a turn in the middle of the night. About 4am the nurse came to do vitals and discovered he had spiked a low grade fever of 100.5. They gave him some Tylenol and have been monitoring the fever closely. They drew blood for labs, he's getting a chest x Ray, they'll do blood cultures and a couple other tests to see if they can figure out where this fever is coming from. He is also going to get another blood transfusion.

He never did get his shower yesterday because of the wait for dialysis and he still has his central line in, so hopefully that comes out soon so that can happen. He's had a small appetite and had a little food so that's a good sign. Urine output is still minimal, but it's not nothing.

Early afternoon we had a visit from the transplant team. They said there are two causes for the fever: one is infection somewhere or some virus/germ. Other is rejection. Dr. Anand (nephrologist) said the odds of it being because of rejection are low though- around 5%. Most likely it's some germ because he was immune-suppressed. They've done a chest X-ray, ultrasound, nose swab, nuc-scan, and are taking blood cultures and urine cultures now. Next step is to get his two different IV lines out (since they've been in for several days and could either bring infection or clot), and put in a new arm IV. They will do a biopsy of the kidney tomorrow just to make sure all is well there. Nephrologist went back and did a second review of the match- of the 20 antigens they watch, this kidney matches Bryce in 19/20. Bryce had low antibodies against that last one so it was not cause for concern. He reiterated that this was an excellent match and they really don't think the fever is coming from rejection.

They've told him not to wait for his appetite to return before he starts eating food. His body needs the protein to heal and recover and if he doesn't start eating food in the next 5 days with more regularity then they have to put him on a feeding tube, non-negotiable. I think that motivated him a bit.

He has the same daytime nurse he's had for the past 3 days and she is excellent. Very good, we like her a lot. He's resting now, will do some stair practice with PT in an hour or two when his pain pills kick in a bit more. He rested for a while this afternoon- that nuc-scan took it out of him!

He is discouraged, and kind of withdraws when he gets like that. Anything I say sounds trite to him and seems to just bounce right off. But I reminded him that I just don't believe the Lord would have led us this far and given us this many miracles only for it to not work out. I know it's scary to trust and believe and get your hopes up. But I just can't live in worryville. It's time to trust and let go of the rest. 

He seems to have turned a corner this afternoon, where he's ready to step out of the darkness and have a little more trust. That's always huge. We have this pattern when he's in the hospital- first day or two he's either in pain or mostly out of it, doesn't respond much to anyone or anything. 

Day 3-4 are usually the lowest/darkest emotionally and mentally. He wants to be better but feels like it's never going to happen. He gets discouraged and disappointed regardless of any reassurances or outside pep talks. He withdraws and even though he's more awake and alert and able to talk he doesn't want to. His head space is just dark and he struggles. 

Day 5-6 he's usually ready to talk about it a little more, ready to say "I feel his way but I don't want to feel this way! Make me feel better! Pull me out of this. I'm so glad you're here. I can't do this alone" whereas on previous days he just goes radio silent. We're in phase 3 right now. So he's ready to be a little more trusting and get into a better emotional and mental space.

Our SIL Kate came down to SLC to go to her Mom’s last Chemo appt today, so she swung by for a visit. It was good to see her. She brought me chocolate covered cinnamon bears (favorite SIL alert!), and some toiletries for Bryce as the hospital supplies for that are a little lacking. It seems like such a small thing but it meant so much to us. We are so loved and so taken care of.

About 1 o clock his nurse came in and started his second blood transfusion. Kate left about 1:15 but before she left he dozed off a bit and he got almost an hour nap, which he said felt great.

In the evening we had a visit from Bryce’s cousin Cami (who is a nurse). It was so good to have a visit after a few days of just us! She gave Bryce a foot massage that will hopefully stimulate his bladder and kidney and get things going. She brought a gift basket full of things for us and the kids- games, snacks, treats, puzzles, a book, legos and coloring stuff for the kids. It made us cry. So much love we have been shown!

Shortly after Cami got here our friend Brynne came to visit and brought me some things I badly needed. Abby brought me more clothes on Monday, but there were some other thing I was out of- I didn’t pack to be here for a week, just two days! She also brought some snacks and dinner. It meant so much to us, as small as it seems to someone else. We all sat and had a good visit.

Bryce then got his central line out and was able to have a shower! It felt great but it was still a little stressful for him. We had to take off his “band” which is like a wide Velcro belt that goes around his whole mid section and it is holding everything in and tight while his abdomen heals from surgery. It was painful and a little touch-and-go for him to be moving around without it. We got him all cleaned up, dried off and settled into a bed with clean sheets and in a clean gown. We watched some TV while he dozed, largely undisturbed and then we both headed to bed.

I’m sure there are some reading this update that don’t care for a testimony at the end. I can respect that. But this is my blog and I can write what I want 😝And you also need to understand that this has been such a difficult, faith building time for us. I can not separate my faith and my blessings from this hardship. They are too intertwined and connected to see one without the other. While this transplant itself has been harder than we anticipated, I can look back at the last 4 years and see the ways in which we were prepared for this. If it was the Lord’s will that we get a kidney after only a few months on the list we would have been prepared for that I am sure. I can imagine Him saying though “This is going to take 50 months. If they have to wait that long, we might as well help them learn and grow while they wait. No sense wasting time.” Most likely more compassionately than that however. Because if there is one thing I know for certain about our Father in Heaven, it is that all things are done with great love. 

Being able to see the Lord’s wisdom and timing, even if only for a second, always takes my breath away. And gives me that moment of “Of course! Why did I ever doubt?! It always ends up working out!” For me, all those hard days, all those dark moments and tears and prayers and pleadings are worth it, to get a glimpse of His plan and see what He sees. 

Days 3-4

Tuesday

Last night was pretty tough. He was really anxious- couldn't get comfortable, was in some pain and having anxiety about it and worried he wouldn't be able to control it. Didn't want to do anything- he didn't want to sit, or walk. Or sleep. Or watch anything. He was pretty restless and frustrated and just struggling over all with how he was feeling. Lots of anxiety that this kidney wasn't going to start working and we'd have to do this all over again, regardless of what I tried to reassure him. He was in a pretty dark place emotionally and mentally.

We did a small sponge bath but then he started to have some pain so we ended. He got back into bed and brushed his teeth. By then he was due for another dose of pain meds so the nurse brought those in. After 20 minutes it still wasn't covering the pain, so she got in touch with the doctors and they were able to adjust his dose to 3 every 3 hours instead of 2 every 4 hours. That helped him relax and fall asleep. We both slept largely uninterrupted thru the night- which is no small miracle. And it always improves ones outlook for the following day. 

Early this morning his nurse came in and informed us his hematocrit was 19, which meant his hemoglobin was 6.3. Not the lowest we've ever been, but they still recommended a transfusion so they did one unit of that this morning. 

About 11 the doctors came in during morning rounds and we had a good conversation. Again, they assured us it is going to take some time, probably closer to the 2 week range, before everything is up and running the way it should be. It was a DCD kidney. It traveled from far away so it sat on ice for a considerable amount of time. Bryce's bladder hasn't been working in years. The donor was 55+ (which was new information), but had normal kidney function. The fact that it takes longer to get up and going has zero bearing on the life of this transplant. They said in a year, if they compare Bryce's kidney function to someone who had a perfect match, living donor, and started working instantly their numbers would be the same. And that is why they felt so confident about this match. We just need to continue to be patient. His catheter will stay in for a few more days (we may even go home with it), and they will look at numbers and function and decide whether to do a biopsy sooner rather than later. They usually wait until day 7 to do it (sounds like it's pretty standard operating procedure on DCD kidneys) but in this case may do it on day 5 just to be sure so that if all is clear they can send us home.

They also have switched him to regular food (Yay!) so he will have a real meal when he gets back from dialysis in a few hours. He also got the thumbs up to take an actual shower. That won't be until later tonight because he has one more IV treatment of his thymo (anti-rejection) that he needs to get thru his central line in his neck. But as soon as that comes out he is free to take a shower (which he is very excited about).

Slow progress but all good things and nothing that the doctors seem worried about so I'm not either.

By 1 in the afternoon he had produced 25mL of urine. All of yesterday he only made 35mL so this is a small improvement!

He went on a walk and worked with OT, who were really impressed with all he can do.

All of our many (many) hospital stays with Bryce the past 4 years have set a pattern that has given us encouragement for the next phase. The first day or two he's either in pain or mostly out of it, doesn't respond much to anyone or anything. 

Day 3-4 are usually the lowest/darkest emotionally and mentally. He wants to be better but feels like it's never going to happen. He gets discouraged and disappointed regardless of any reassurances or outside pep talks. He withdraws and even though he's more awake and alert and able to talk he doesn't want to. His head space is just dark and he struggles. 

Day 5-6 he's usually ready to talk about it a little more, ready to say "I feel this way but I don't want to feel this way! Make me feel better! Pull me out of this. I'm so glad you're here. I can't do this alone.” whereas on previous days he just goes radio silent. We're in the second day of phase 2 right now. Looking towards tomorrow with optimism. I’m grateful these times spent in the hospital have prepared us for the road we are currently walking. 

My brother shared this quote and I really appreciated it. I felt it applies perfectly to where we are right now.

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