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.