1 Year Later...

This is a post I've been thinking about for months, slowly piecing together in my brain. As surreal as getting the transplant was, it feels just as strange to be a year removed from it. There have been ups and downs, just like we knew there would, although some have been quite unexpected.

Bryce had 2 episodes of rejection fairly soon after the transplant, one in April and another the end of July beginning of August. Both were caught early, due to his twice-weekly blood work so we didn't have any major complications. They treat rejection with a huge dose of steroids, which carries it's own lovely set of side-effects and problems. But as always, he was a champ and came thru the other side going strong. The rejection in July was a rough one; They do a biopsy to determine what kind of rejection is happening (there are two types of organ rejection: cellular organ rejection and antibody, we think. It's been a while and we try not to think about it too much. Positive thoughts.....) but during the biopsy in July they went too deep into the kidney (sounds fun doesn't it?) so they got too much fatty tissue and weren't able to definitively say. They treated it as cellular rejection and since his body responded to the treatment we assume that's what it was. 

While Bryce was upstairs in his hospital room with a sandbag on his kidney waiting for the bleeding to stop, I was down in the ER facing some health issues of my own. It was hard. And lonely. The next morning the transplant team came in and informed us that they had given the kidney the time it needed to really start to function the way it should and they just didn't think it was ever going to be fully up to snuff. They were going to appeal to UNOS to get our wait time back and get back on the list. We found out we did not appeal in time (it has to be within 90 days of transplant) and so we were starting back at Square One for the transplant list. Oh that was a hard month! Two discouraging medical diagnoses within 12 hours about broke me. Sharing the news with our kids was the hardest, they were devastated. Thankfully, we had each other and our amazing supportive Village to get us through.

His and Hers IV's

 Bryce's last hospital stay was in October for complications after his parathyroid hormone removal surgery. (https://en.wikipedia.org/wiki/Parathyroidectomy)

Luckily, it was only a couple days because it was a busy time with our family life and I was unable to go to SLC to be with him while he was there. Our goal is to make it 6 months without a hospital stay and so far so good. We feel as thankful as ever for access to good medical care, good insurance and doctors who have become like family to us. (One of his nephrologist PA's brought him HOME to Provo after his hospital stay in October because I couldn't get away right when he was discharged! She is a gem, we love Jodi so much.)

Every week for his blood tests his numbers have been borderline: bad enough to keep him on the transplant list, but good enough he hasn't needed dialysis. It's not great, but he has felt pretty good honestly and feels night and day from how his health was a year ago. And if you have to be on the transplant list, this is the way to do it. His PRA (antibody) count is still high enough that he is at the top of the list. Everyday we can go without having to go back to dialyzing is a day we will take! We were so thankful we had it and that it prolonged his life long enough to get a kidney, but also thankful we don't have to do it. May we never have to do it again...

Of course in the fall we got the exciting news that we were expecting. We could not be more thrilled for this baby; She is a miracle in every sense of the word. One I was afraid would never come, despite all the feelings in my heart about her missing from our family. She and this kidney transplant are inextricably tied together in ways that have forever changed us and reminded us in ways big and small that God loves us, hears our prayers and has His own timetable for things. We just need to have the faith to take a step or two into the darkness and then the way will appear. Someday I will share the story of how she got us this kidney, and how this kidney brought us to her. But that is a story for another day.

Bryce had a transplant evaluation with the entire transplant team up at IHC on Wednesday the 20th. 

A few months ago when he met with them, they told him they wanted him to lose some weight before putting him as Status 1 (active) for another transplant. At the appt they measured him and told him that his measurement were acceptable to list him Status 1 and officially put him back on the list. They then explained the exchange/paired program, which we knew about last time but has apparently become more robust and successful lately. It is a system of matching up organs with willing living donors. So one of our potential donors may not match with Bryce, but they match some person in Florida; While the patient in Florida has a living donor that isn't a match for them, but who is a match for Bryce so they essentially swap donors. These can be simple exchanges or they can be elaborate chains. They said they thought his chances were good for Round 3 of a transplant by end of this year.

We were shocked! They seemed confident however, so we are trying to match their enthusiasm while also tempering expectations. 

 

The doctor told Bryce "You are young and healthy. And this will be your 3rd kidney transplant. We want this one to last you 20 years, or longer if possible. We want a good match from a living donor and I think this organ-sharing program is the way to get that." The doctors and coordinators emphasized living donations are generally much more successful and have a longer life.We feel so blessed to have had 2 kidneys given to us, and now possibly a third. It almost feels selfish to want this, but we are trying to remember to be grateful. My sister has this sign in her house, and she got me one for my home for my birthday and I love it so much. I DO remember the days, nights, years we prayed for this kidney. To be done with dialysis. The prayers I prayed for another baby. A girl. A sister for our sweet Janie and a calm for the aching in my heart for the one I felt was missing. I will never forget how good my life is, how my prayers have been answered and I have been given not just what I wanted, but what I needed.

Found this note inside a book my "Fairy Godmother" gave me back in 2006. Sometimes we don't see the same qualities in ourselves others do. Reading that she believed I had risen and faced the world with a smile and resilience made me think I could, even when I thought I couldn't. These words mean even more to me now than they did then.

 

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.