December 28th and 29th

Wednesday morning:
He had a pretty good night's sleep last night- when I got here this morning he was dozing while watching ESPN (which is a great step!) and he's dozed most of the last hour. His numbers after dialyzing yesterday are better- sodium, phosphorus, potassium and creatinine are all down and all but creatinine is within normal range (although his normal range for creatinine is way above normal for most people). His pain has been much more manageable today- the nurse came in to give him his next dose and Bryce didn't need it yet so we held off a little while. Also good. Vascular surgeon came and checked his fistula, said it looks good and all is well there. He has been complaining of a lot of pain in his left hip so they've ordered a CT scan for sometime today to make sure that's okay. He's eating a little jello and juice. He stood up for a minute with physical therapy this morning and they're hoping he can do that again this afternoon when they come back. They'll take more blood cultures today to see if the bacteria in his blood is coming down and responding to treatment. His fever has come down a lot to, just at 100 (with the help of Tylenol). All good things, moving in the right direction. I think I can safely say we're past the worst of it. Still think it'll be at least a couple days before he comes home but him being comfortable enough to sleep is huge, he can't heal if he can't rest! Love you all! We're in good hands.

Wednesday evening:
Doc came in- said they looked at his hip CT a little closer and they saw some inflammation in there. They don't know if it's secondary because of the sepsis or if it's some arthritis. He said if it's some arthritis it could have gone septic and been the cause of this episode; the only way to know is to go in with a needle and get some fluid from in there (similar to a biopsy) and test it for the bacteria. They'll do that tomorrow at some point, he is scheduled for dialysis tomorrow at 8AM.
He has slept the whole afternoon (except for his CT and PT) and just woke up much more awake and alert. He said "I have a couple questions for you. How did I get here?" I told him about the paramedics and meeting him in the ER; he remembers nothing at all from the first day and a half here. He remembers Duke coming yesterday and his boss stopping by. Then he asked about the kids, I told him who has had them and how they're good. I told him about the meals we've had coming in and how I came home to three times as much food as I was expecting yesterday and tears just started rolling down his cheeks. Bryce isn't an easy cryer so I knew he was really touched. He didn't say anything, he's had a hard time finding words to say much and I know the emotion made it that much harder. We are so humbled, so moved and so grateful for all everyone has done.

Thursday morning:
My sister Amy arrived from Missouri to help for a few days; she leaves on Sunday morning. It's helped so much to have her here- if I have to face this with anyone other than Bryce I would choose her. He slept pretty good last night he said. He dialyzed this morning at 8, they took off 3.5 liters, his blood pressure still looks good and he just finished. He had some dinner last night- applesauce, chicken noodle soup and some roll so we're progressing past jello and juice. This morning he had applesauce, jello and a muffin for breakfast. He is anxious to get up and moving with PT even though he knows it's going to hurt a lot.

Thursday afternoon:
They just finished the fluid pull from his S1 (bottom of his spine, guess that's the site of the inflammation) It was awful. I had to wait out in the hall and I could hear him screaming- I've never heard him in pain like that. The assistant stuck his head out and said Bryce told him to ask me to pray. Gotta admit I lost it for a minute there. The radiologist came out after and talked to me- said they were able to get a few drops of fluid, mostly blood, and they'll try and culture that. The critical care doc said since he's on antibiotics it might come back negative anyway or take longer to grow, but we just won't know until they come back which takes 48-72 hours. He said it is definitely inflamed, they just need to figure out if it's infected. If it's not, the course of treatment is steroids and anti-inflammatories.. Bryce asked if he could just shoot some steroids in there to get it to heal. But if it's got bacteria that will just make the bacteria grow so that's not an option now.
The doctors are encouraged, progress is slow but they are moving in the right direction. Bryce is much less optimistic. He's been in so much pain and so uncomfortable; he's been pretty discouraged and down that he's taking a while to recover. He's a little worst-case-scenario right now, I keep reminding him we don't even know yet what the results are going to be so working ourself up over it being bad doesn't help. We'll wait til we hear more and cross that bridge as we come to it.
PT came right after we got back and he just couldn't bring himself to try and get up. They did leg/arm exercises in bed. His other numbers are looking good, I think the major thing right now is this pain in his hip.
He mentioned maybe a family fast- starting tonight going until tomorrow night? It's certainly not mandatory, anyone is welcome to join.
Thanks so much for all the continued love and prayers and support. We know that this too shall pass.

Working hard to stand for the first time with PT

Kids pretending to go sledding at home with Amy

Dialyzing in our room in the ICU

Happy Boxing Day

Monday afternoon:

After being restless for almost an hour: pulling off his monitor stuff and oxygen, taking his blankets off, tossing around- his nurse came in and we packed him with ice to bring his fever down. I couldn't get more than a one word answer from him.

"Do you hurt?

"Yeah"

"Where do you hurt?"

No response

He has been talking a bit more the last few minutes, able to carry on a short conversation and listen a little better to commands to leave his monitors alone and the ice packs in their place.

Monday night:

Took us most of the day to get him settled- he was pretty restless and unresponsive for most of the day. Finally got his fever down a bit from packing him in ice packs and figured out where he was in pain so they got that under control and then he has been sleeping well the last couple hours. He will have an echo in the morning to make sure the MRSA/staph didn't damage his heart valves and then he will dialyze in his room. He's a bit more communicative now which is great. Fever has come down from 103 to 100.3 so that's great too. Doc had his norepinephrine turned up pretty high (it brings his BP up) but that comes with nasty side effects when it's that high for a while so they put an arterial line in his wrist to give them his BP in real time so they could give him some vasopressin to also bring up his BP, meaning they could turn down the norepinephrine and avoid some side effects. Glad they're using meds to help bring up his BP and not just pumping him full of fluid like they sometimes do.

Tuesday morning:

They say last night was pretty restless. They've been dializing since about 7am ish. They had a little trouble with his BP but that has been steady since about 9. His temp is 99, he has about 40 mins of dialysis left. Nephrologist came in about 15 mins ago and said they're trying to get enough fluid off him without taking his BP low. Said they won't do dialysis tomorrow unless his numbers after today's treatment still aren't good. If that's the case they'll do a long treatment tomorrow, about 6 hours and then they can pull fluid off slower and it's a bit better for your BP. He did tolerate them taking off 3 liters of fluid though, which is great. He was in some pain, lots of laying in bed and trying to get comfortable, so the nurse just gave him some more fentanyl so he's konked out. He's still pretty in and out but more coherent than yesterday so that's an improvement. He's having an echo done on his heart about 1. His brother Duke came down early this morning from Idaho to be with us in the hospital for a day so that's a nice boost for both of us.

Tuesday afternoon:

Just finished the echo, they said everything looks great, no heart valve damage or infection. He's still pretty out from the Versed they used during the procedure but he's resting comfortably.

Tuesday night: 

It was a restless day. He could never seem to find a comfortable position for longer than 5-10 minutes unless he had some pain medicine in his system knocking him out for a nap for an hour or so. All day we moved and repositioned and propped and changed position and more pillows and less pillows and sit up and sit down. It was pretty exhausting. I'm sure his nurse was worn out too. He is still pretty confused and will forget things we've told him just seconds after hearing them or say the same thing over and over even when we answer him. Physical Therapy did come in this afternoon and he did briefly stand with a great deal of assistance. He had a little bit of food, Jell-o and some grape juice, a sponge bath and bedding/gown change. They are turning down his doses of norepinephrine and Vassopressin (both for his blood pressure) and it's been staying up so that's good. His boss came for a short visit and I had a friend bring me some treats and chat for a few minutes. He is resting now and has been asleep pretty deep for an hour, so that's great.

He's had great nurses and Duke was a great help and comfort to both of us today, he helped with much of the repositioning and moving of Bryce around. He also gave a sweet blessing to Bryce before he left, reminding us both of the help we have from family and friends here and on the other side of the veil. I had a friend remind me of the same thing last night- that the veil is so thin. I have felt so calm and so comforted thru all of this from the prayers of everyone and also because I know my Mom is with me. She is the most calm, steady person I have ever known and I feel her presence with us, helping me be calm when reason says I should be a mess. We are so so blessed and so thankful for our burdens that refine and strengthen us, and give us the traction we need to move forward.

All I Want for Christmas is not a hospital stay

Saturday the 24th Bryce started feeling a little sick- fever, chills, nausea, some vomiting. He threw up once about noon and went to bed to rest. Afraid it was sepsis, my brother came and gave him a blessing; After about two hours we noticed his fever spiked again back to 101.3, so he got out of bed, threw up again and then we headed to the ER, leaving the kids at home with my brother Jarom and his wife Randi.

They got us back and got an IV in; it took a while since they can't use his right arm for any pokes due to his fistula and that he was a little dehydrated. They took blood cultures and did a nose swab, hoping it was just the flu so we could go home for Christmas. They also gave him some fluids, Toradol (pain), Morphine (pain), Ativan (relax) and some ibuprofen and did a chest x-day. After a few hours the results of the nose swab came back positive for Corona virus, a nasty cold/flu hybrid that would knock him down for a few days with a cough that would last 2-3 weeks. They sent us home with some prescription strength cough medicine and some Ativan to help him rest and relax his breathing. 

We got home that night, did a quick Nativity reading with the kids, ate some dinner with friends, put the kids to bed and hooked him up to dialyze. His potassium was 7.6 (they like to keep it under 6) so the ER doc told us not to take and fluid off, just clean for that treatment. I set up for Christmas while he slept and dialyzed; when he finished we both went to bed.

Kids came in about 8:15 ready to open presents. I couldn't get much response from Bryce- he was having a hard time waking up or getting out of bed. After an hour (the kids couldn't wait any longer) I sat him up, gave him some Tylenol to help with his fever, got him dressed and helped him walk down the stairs. He sat in his chair and instantly fell asleep and slept thru the whole Christmas morning. After an hour I suggested he just go back up to bed since it was more comfortable to sleep. He went back to bed (we held off on opening more gifts) and slept for several hours. I came in about 4:30 to see if he was more alert after having gotten some sleep; he said he was awake enough he was going to take a shower and come down to finish opening presents. He almost made it thru all the gift opening before falling back asleep in the chair in the living room. Kids played, we visited with Jarom and Randi, made and ate dinner while he slept on.

About 9 he went up to bed, started setting up for dialysis and we started treatment about 10:15. Usually he has to hold still on his back or else the machine will alarm but he was too out of it to do that so the machine beeped incessantly until we finished at 3AM. I helped him out of bed and to the chair when we finished. When we took the needles out and taped up his arm he wasn't holding them very well so I sat with him until I was satisfied his sites had clotted. We went back to bed and he kept saying "It's satisfactory." I finally got up and turned the light on and his site on his arm was bleeding thru his bandage but he was too out of it to notice. There was blood all over his clothes and the sheets. I got him taped up and the bleeding under control (he was so disoriented I couldn't get him to hold still) and some of the bedding in the laundry. 

We slept in this morning and I woke to Pierce telling me Owen had made a mess with the play dough (because it's Owen!) so I headed downstairs to clean it up and get the kids fed some breakfast. I went back up about noon and noticed Bryce's breathing was labored. I woke him up and tried to get him to answer me- he couldn't say anything beyond "yes" or "no". We hadn't kept up with his Tylenol during the night so I could tell he was running a fever again and tried to get him to drink some water and take the pills but he couldn't get his lips around a straw to drink. I took his temp, it was 106 so I called his Dialysis Nurse- she said I either needed to call paramedics or get him to the hospital right away. I knew I wouldn't be able to get him to the car if he didn't wake up a bit. I said "Bryce, Shawnna said I either need to take you to the ER or call the paramedics. I don't think you can walk well enough, I'm going to call 911." He moaned and I took that as his okay to call. 

Paramedics came and checked him out, thought maybe it was pneumonia. Got him out of bed into a chair and down the stairs to the gurney and then into the ambulance. I called my brother to come stay with the kids, took a quick shower and got dressed and headed to the hospital to be with Bryce.

When I got here he was in the trauma unit of the ER (the nurses recognized us from Saturday) and they directed me to his room. The lab had gotten the results back from the blood cultures they took on Saturday- it came back positive for MRSA/staph. They had called Bryce three times this morning and left messages telling him the results and that he needed to come in but he had slept thru it and they didn't have my number (they do now). They got in a neck IV line right away and gave him fluids, drew more cultures and got antibiotics started right away. He has been moved to the NST ICU and is getting settled and worked on right now.

I am good, the kids are good; Bryce is in good hands, we are completely confident in his care here and that he will recover. Thank you so much for all the love, prayers and support! They help and sustain us thru these uncertain times. How thankful we are for the knowledge we have in eternal families and that Bryce will be ours forever. We are hopeful for his complete recovery and remain optimistic that his body will heal and become strong again.

Successful Surgery

We got a call on Wednesday evening informing us Bryces surgery was scheduled for 11:30 the next morning. Bryce called the surgeon (yep, we are THOSE patients!) and said he had some afternoon meetings at work he wanted to try and be done for so if they were able to move him up earlier in the day at all to let us know. 7:30 Thursday morning we got a call that if we could be there in 15 minutes he would be next. He hurried and got ready, I dropped him off expecting to hear in a few hours he was done and ready to come home.

At 11:30 he texted me and said he was still waiting! He hadn't even had the procedure done yet; the one before him had complications and ended up taking 4 more hours. He eventually got back for his turn at 12:30. The nurse called at 3:50 saying he should be ready in about 45 minutes. I fed the kids a snack, we loaded up and went to get him from outpatient post-op. Of course since he's been on anesthesia he can't drive or sign himself out, so I had to park, take all 4 kids in and wait in his teeny tiny "room". 

Dr. Ballard (his vascular surgeon who did the surgery) said it went well; they opened his right arm fistula up quite a bit and said he thought it should stay open. They put his new chest catheter in on his left side now (his last 3 have been on his right side) so that's given his other side a little time to heal. It's working fine; we've dialyzed with it twice already. It's much tighter in place so hopefully (fingers crossed) that means we won't have any problems with it. Dr. B said he has every expectation his fistula will continue to  mature and be ready to use in 6-8 weeks and then we can be DONE with this CVC stuff for good!

Bryce has had a little pain and tiredness but has bounced back better than his last two so far. He felt well enough that evening to come to Pierce's last soccer lesson. We're thankful he is such a trooper! Heaven knows none of this is easy for him; were so glad he's a fighter and puts on a brave face for the kids even when he's not feeling his best.

Third try's the charm

Bryce had been having some pain and more movement than there should be with his chest catheter the past few days. At this point it's supposed to be healed enough that pain and movement is a problem. He called the vascular surgeon over the weekend- they scheduled an appointment with him today. 

They removed his CVC (the second one in as many months) which the doctor said was infected and will put in yet another one in a procedure on Thursday. He also checked Bryce's fistula which didn't feel as strong as his last one did at this stage. They did an ultrasound and said there has been some narrowing of the veins so they will also go in and try to balloon the veins back open during his procedure on Thursday.

Fistula #2

Bryces fistula surgery today went well, they didn't have any problems. The new fistula is now in his right arm; they also fixed his chest catheter that we've been having problems with when we dialyze the past week. They took the old one out and put in a whole new one in a slightly different site so we are hopeful that makes treatment go smoother for the next couple months until we can use the new fistula. Bryce hasn't been able to feel the usual strong pulse (the thrill) in the new fistula but the doc said to give it a few days and see. He's been able to rest comfortably this afternoon and evening and is dialyzing now to try and make up for the shortened treatments as of late.

For details of how the day went read on; if you're not interested it's fine ☺️ Just know he is doing well and feeling okay. As usual, we appreciate so much all the love, thoughts, prayers and checking in on us today. It always helps keep us calm in otherwise turbulent situations. And if you know me you know how much I appreciate calm 👌🏼

Bryce had to be to the hospital at 5:45 this morning to prep for his surgery at 7. I got a call at 10AM from Pre-surgery saying he was done. I got the kids ready in a hurry and out the door, hauled them all inside and back to his recovery "room" only for the nurse to look at me like I was crazy. "He's not ready to go."

I was still breathless from the adventure of wrangling the kids to this point.

She informed me he would still need another 30 minutes or so to pull out of it and be ready to be discharged.

The kids hadn't had breakfast yet and I didn't want to drag them back home so we went for breakfast at Carl's Jr. and the kids played on the jungle gym for almost an hour. 

I still hadn't heard anything, so I sent Bryce a text with no response, then called the hospital for an update. I spoke with his nurse who told me he was still really drowsy and when he would dose off his oxygen would drop, so she couldn't let him go until he got his oxygen numbers higher. I told her he sleeps with a CPAP so unless he has his mask on while he sleeps it's normal for his oxygen to drop. She said she'd give me a call when he was ready. 

By now it was noon so I thought I'd take the kids home, get them ready for naps and then be able to head back when I got the call. I loaded the kids back up, drive home, got kids unloaded and settled in to wind down before naps and Bryce texted saying he was ready. Since I had to sign discharge papers I had to bring the kids in, I couldn't meet him curbside. So...we loaded back up and headed back to the hospital. We got right back, got our discharge papers, dropped off his prescriptions at the pharmacy and came back home. Got everyone settled down for nap time and headed back out to get his pain medicine picked up.

It was madness all day, but now it's over and hopefully he can sleep well tonight and get a good treatment in tomorrow too.

This is a picture of Bryce's old chest catheter. The new one looks slightly different but it's basically the same. It's on the right side on his upper chest, just below his collarbone.

Fistula redo

Last Thursday we had a hard time with Bryce's pressure coming from his site during treatment. The machine beeped pretty much non stop for two hours so we had to end dialysis early. We thought maybe the site in his arm was being temperamental- sometimes it just freaks out for no reason. Usually we are able to get it fixed and continue with treatment but no luck his time. Friday night we went to dialyze and as part of our pre-treatment checklist we have to see if his fistula is getting good blood flow. We can listen to it with a stethoscope and feel the strong pulse with our hand. We checked and didn't find either. Bryce called our Home Hemo Nurse who told us that could mean a blood clot in his fistula, so she would schedule an emergency fistula-gram for Saturday morning.

Saturday at 11 Bryce went in for his fistula-gram in the radiology dept. They planned to go in with a sonogram machine and map his veins, see if there was a clot and if they could clear it out. They found three clots up in his fistula veins and spent three hours ballooning his veins to try and clear the clots and get the lines to open back up. No luck. Last resort they put in a chest catheter (CVC) like he had when we first started for us to dialyze with in the mean time. 

We've done three treatments with the CVC and it's annoying- with a higher risk of infection (since it's basically an open wound) we have more precautions and steps to take when we dialyze. It is less comfortable for Bryce and sets off the machine alarms a lot, which wakes us up all night and makes the treatment longer. 

He had an appointment with the vascular surgeon today to see if the fistula could be saved or if we would need a whole new one. He gave us two options: 1.) Do a surgery on the right arm (his current fistula is in his left) and add a whole new fistula there. 2.) Do a surgery on his left arm and add a graft in the current fistula deeper in the arm to make it work. The doc recommended the first option, so surgery is scheduled for next Friday May 6th. The new fistula takes about 6-8 weeks to heal, mature and be strong enough to use so we will have to dialyze using the CVC in the meantime. The first time he got sepsis was from his CVC so that's obviously a concern at this point for us. Not sure if we will be able to go back to evening treatments so we can get better sleep at night or if because we get better cleaning and dialysis we will just have to suffer thru and do it at night.

This is just one more thing that makes us even more anxious for a transplant and hoping for a call any day that they've found a match!