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.