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! 

Nocturnal guinea pigs

A couple months ago our HHD Nurse (Head hemodialysis nurse) told us about a new kind of dialysis that had just gotten approved in the U.S. She said with Bryce's factors we might be a good candidate for it, that the dialysis center was currently writing procedures on it, and she would keep us informed on how the process went. They discussed it with Dr. Senekjian at Bryce's clinic visit in June, and he agreed that Bryce would be a good match if it was approved before he had a transplant. Our HHD nurse ordered all the parts and pieces and worked on getting everything lined up to get us started on it. We've spent the last couple weeks making changes to accommodate the new set up (moving furniture, installing electronics, plumbing lines being run, etc.) Some of the parts were on back order, so it took a few weeks longer than we were thinking but the last essential piece arrived on Saturday.

The new process is called Nocturnal hemodialysis, meaning the machine runs while we sleep at night. It uses the same machine and method with slightly different settings and equipment. Before it would take about 3 1/2 hours of time on the machine, plus about an hour for set up and take down. Now we change the settings for the machine to run much slower, which provides better cleaning (hypothetically) and reduces the potential of low blood pressure problems since the fluid is being removed at a rate much closer to what your functioning kidney would. Hopefully this will also improve his blood work numbers and we will be able to eliminate a prescription he has been taking three times a day.

Because the machine runs while we are asleep, it means we aren't constantly monitoring his vitals like we used to before. So we have more monitors and alarms in case a problem should arise and we don't wake up for it on our own. This in addition to Bryce sleeping with a CPAP makes for a pretty crazy sleeping arrangement- lots tubes and wires and plugs and cords all over the place. But we are grateful for the blessings of modern medicine and technology that make all of this possible from our bedroom! Pretty amazing.

The nurses came last night to help us get started and get comfortable with the new parts and settings. One of the changes that comes with this new machine is a heparin pump. Heparin is a medicine we use every treatment, it's a blood thinner that keeps Bryce's blood from clotting while its outside his body and running thru the machine. His treatment used to be short enough that one dose at the beginning would last til the end. But since the machine is running so much longer now, just a starting dose wouldn't last the whole time. So we have a pump, similar to an IV pump at the hospital, that slowly releases doses of Helprin throughout treatment. It's a little finicky, and not at ALL user friendly. 

We spent a while figuring it out and the appropriate dosage of heparin for the length of our treatment before we got settled in last night. The machine was set to finish at 4:15 AM and would alarm when it was done. It went really well, no extra alarms or problems during treatment (at least not that we heard!) so we woke to the finishing beep and got him unhooked and went back to sleep. I'm sure it won't always go this smoothly, but it gave us a little confidence since we were kind of unsure. Bryce is the first patient at this center to do nocturnal dialysis; He's also Dr. Senekjians first nocturnal patient and he has been practicing nephrology for 30 years. We will be the guinea pigs and figure things out as we go, but we are so glad to be in such capable hands. We're hopeful this will be a good, effective change and that it will improve the quality of treatment and also our quality of life for the duration of this dialysis part of our lives, however long it takes.

Jones-ing for the good stuff

Trying to stay ahead of this story, or at least not behind it, this time around.

We had an awesome trip to Missouri and Colorado a month ago; We got to do and see tons of people and things I've been wanting to do with my kids for a long time. We took the dialysis machine with us to dialyze while we were there and had our supplies and fluid shipped right to my sisters house where we would be staying and dialyzing. Like most vacations it was lots of late nights and early mornings and exhausting activities, so when we returned home and were tired we didn't think much of it. You've heard the "I need a vacation from my vacation!" a day or two to recharge and get back on a schedule and acclimate to real life again. But Bryce just couldn't seem to get his energy back, even as the days of being home stretched on. He was coming home at lunch for naps, falling asleep during treatment, going to bed early, sleeping in and napping on weekends and still was always exhausted.

We had plans to go to Idaho for the 4th of July and leave Friday the 3rd and come back Sunday the 5th. Thursday evening while dialyzing we noticed during treatment that his temperature was rising and he was getting a fever. He took some Tylenol and went to bed early, we decided we would see how he felt in the morning and postpone our trip if needed, leaving Saturday morning if he felt better.

Friday he woke up still feeling awful, and still had a fever so he took more Tylenol and went back to bed. I went to SLC with the kids who stayed with Moff while I went to a wedding. About noon I talked to Bryce and he said he still wasn't feeling better. We decided to let him rest and see if he woke up feeling better Saturday morning and then we would head to Idaho. I brought the kids home and we all took naps. About 4PM Bryce said he was feeling better and we should try to go on our trip. So we packed back up, loaded the kids and got on the road. We got to Clifton about dark and set off fireworks that night before putting kids to bed and crashing. Bryce's fever was back, so he took some more Tylenol.

I woke up to him telling me his right ribs hurt and he thought he was going to throw up about 5:30AM. He headed upstairs to get a blessing from his Dad and Linc and rest on the couch. I didn't hear any more from him, so I slept til about 9:30 then came upstairs. He said the pain was really bad and we needed to go back home to Provo. Mom said Hollie had already called and said she could keep the kids until at least Wednesday. I wanted them to stay and be able to play with cousins (both Pierce and Jane cried Friday morning when I told them we weren't going to Grammy's) and do fun 4th of July activities they had planned. Plus, if Bryce ended up in the hospital it would be hard to keep finding people to watch the kids. So I packed everything up (again), kissed our kiddos and started the drive back to Provo.

I dropped Bryce off at the ER when we got into town and went home and unloaded the car before coming back to join him. (Side note: we have spent a lot of time at the ER and I have never seen it like it was that day: standing room only in the waiting room, 27 people behind us waiting to get in, had to park out on the street because the lot was full. It was a madhouse, exactly like what you'd see on TV) He was set up in an ER bed with his IV in and monitors going (oxygen, blood pressure, heart rate, etc.) The doctor came in after a while asking about symptoms and doing a consult with us. He said the X-ray they took when Bryce got here looked fine, and based on symptoms they were going to check for a blood clot in his lungs or pneumonia. He was in a TON of pain, could barely breathe and kept asking for pain medicine. They gave him some dilaudid in his IV, that made him comfortable enough to rest until it wore off. He went for a CT scan and they drew more blood to test for a clot (who knew they could test for that with blood work?!) (Another side note: Bryce's reaction to the dialudid was hilarious, and if he hadn't been in so much pain I think he might have been a little embarrassed. He was going on and on and on and ON about about good it felt. I told him he needed to be careful or they were going to think he was just jonesing for a fix of pain meds!)

About an hour later the doc came back and said the CT scan showed some fluid/infection in the bottom portion of his left lung, which was causing the problems (pain, cough, trouble breathing) and they were diagnosing and treating him for pneumonia. His BP (blood pressure) was also really low (80/40) and the doctor was concerned about that. They gave him some saline fluid, antibiotics, pain meds, and a medicine to raise his BP thru his IV over the course of about 2 hours. The doctor told him if we didn't get that BP up they would need to admit him. Bryce put up a good fight, but the doctor finally convinced him he was sick enough (according to his numbers) that he was being admitted, the question was whether it would be to a regular floor or the ICU.

After 3 liters of fluid and the BP medicine his numbers were still only 105/49. The critical care doctor came in and did a consult with us about symptoms and medical history, also informing us if they got him up to his ICU room and his BP didn't get better they would have to put in a chest catheter as a last resort to be able to give him adrenaline straight to his heart and fluids if he started to bottom out. That got our attention, and made Bryce realize he needed to be here in addition to the pain that kept coming back every time the dialudid would wear off.

They got us a room in the ICU and moved us up about 9PM and got him settled. I left for about an hour and a half to go visit a friend of mine and her new baby that are here in the NICU, and when I came back he was ready for bed. His nurses here in the ICU have been so good, very attentive and positive, getting him everything he needs as soon as he needs it (or in the case of pain meds, as soon as he is allowed to have it). I got him all ready for bed and then went home to sleep.

He had a rough night, the pain got worse so they had to up his pain medicine dosage, which made his BP go down. They got him up and walking around a little bit (which he said was really hard and hurt) but it did bring his BP back up to where they want it. The doctor did tell us we caught it early enough that he probably hadn't peaked yet, so the pain could get worse before it gets better; And they would give him as much pain medicine as he felt comfortable doing.

I got back about 11 this morning, and a couple brought is the Sacrament shortly thereafter. He is set to dialyze here in the hospital at some point today, and it looks like they will be keeping him for at least another 2 days. I know he isn't feeling well and needs to be here, despite fighting it at first, because he told me this morning he was really glad he didn't go home last night. The pain would have been unbearable at home and led to another ER visit and wait and eventually admittance.

He's getting good care, we have awesome support from friends, family, our ward and our neighbors. I've said it before and I'll say it again: We have the dream team of support! Not having to worry about the kids (or feel torn that they're at home missing me while I'm with Bryce) is a huge relief. And I know they are having a blast with cousins. Right now we are focusing on getting Bryce feeling better and well enough to resume regular life.

Official diagnosis

The day after the coma incident, we got into Bryce's doctor to have his bloodwork drawn. (Friday)

The following week (Wednesday the 8th) they called Bryce with the results while he was at work. He came home that evening and didn't seem quite his usual self. He was quiet and I could tell his thoughts were off somewhere else. I mentioned it, he said he was fine. But as the time wore on I knew something else was up.

So when the kids went to bed I approached him about it again. He admitted rather reluctantly, that they'd gotten the results of his bloodwork. His kidney was failing. It was official. They told us that would mean surgery and dialysis at the center, monthly appts with Dr. Senekjian. We didn't know exactly what dialysis was or what it entailed so we weren't nearly as bummed out about starting it as we would have been if we had known. We did know it wasn't good though. And that it would change our lives for forever.

This was all so new, even though Bryce had done it before it was very different this time around. We weren't sure how to handle it, what to say or what to do next. There was some time spent just floating around, with this life changing diagnosis but not sure what we needed to do next or what it meant for now.

Luckily, the doctors are very on top of it and took the steps to move us into what came next. Dr. Senekjian doesn't have admitting privileges at the hospital here, so he told Bryce he could either come up to Ogden for his hospitilizations and surgeries (which was nice he gave us the option, but it wasn't possible) or he could give Bryce's info to a nephrologist here, Dr. Hammond, in Provo who could oversee Bryce's care, hospitilizations, surgeries and dialysis all while keeping Dr. Senekjian in the loop. Obviously, that was the only clear choice so that's what we decided to do.

Side note: That weekend we were scheduled to make a road trip to Missouri to see my family for my Dad's 60th birthday (we'd been planning the party/reunion with my siblings for months). Not understanding the urgency of dialysis we naively thought we could have still made the trip. 

On Thursday (the 9th), Dr. Hammond called to let us know Bryce would have to go to the hospital that weekend and have a chest catheter put in for dialysis and fistula surgery. We had no idea what either of those was, and no one bothered to explain it to us. We were given instructions to show up at Outpatient surgery Friday morning at 6AM. My sister Marianne came to stay with the kids and we planned to spend the majority of the day there, but then come home that evening.

We got there to check in and they started asking us questions to verify "So you're here for fistula surgery?" "You're staying the weekend?" And we had to say "We don't know. They told us it would just be outpatient surgery." They looked at us like we were crazy, and obviously this was a surgery that required a hospital stay. We very in he the dark about all of it, which was a really scary, frustrating place to be. So much of this whole situation was completely out of our control, and anyone who knows me knows I don't like being out of control 😁

They got us checked in and headed back to a room, waiting to go into surgery. The vascular surgeon, Dr. Ballard, came in and said "I'll be doing your fistula surgery today huh?" We said "That's what they tell us!" I think it was pretty clear from that response that we were really uninformed about what this all meant. He took a few minutes to explain the fistula; the what, why, who and how. It takes 6-8 weeks at the least for the fistula to be strong enough to use for dialysis, and in the mean time Bryce needed treatments. So on Friday morning they took him back to put in his chest catheter and get him started on dialysis right away at the hospital. 

Here is an illustration of the chest catheter and the fistula

 

Surgery only took about an hour, and he was in quite a bit of pain afterwards in his right shoulder where they put the catheter in. He woke up more as the day wore on though and was in a bit better mood. He was pretty upset he had to stay in the hospital all this time. He felt fine, but apparently it had been Dr. Hammond's plan all along we would stay thru the weekend, although once again no one bothered to tell us that! We still get upset about it, there was no reason he couldn't have come home over the weekend and returned Monday morning for surgery. 😤

Saturday evening Bryce's Mom came down to help for the weekend, so she got some time to visit with him. Sunday we brought the kids up to the room after church and Moff joined us with Mom and we all had a good time in the room. 

Some of the fun from the hospital room Sunday evening

Monday morning dawned bright and early, his fistula surgery was scheduled for 6AM, so I woke up and headed to be there before he went back and I could wait in the waiting room. If you've never spent any time in a hospital waiting room, I'd say wear that badge of pride! It was a great reminder though that there are other people and families facing much more serious health issues. In all things be grateful!

I'd be lying if I said I wasn't relieved when the surgery was over (it was only about three hours) and Bryce was back in his room. He spent the day recovering- sleep, wake up, ask for pain meds, repeat. I spent time texting family and binge watching the Game Show Network.

As soon as Bryce was able to be awake for longer than 5 minutes at a time, he started pushing them to let him go home. Tuesday afternoon he was doing well enough they discharged him and he came to rest and get feeling better here at home. He was back to work Wednesday and ready to get back to normal life. Or at least normal as we now knew it.