Transplant Day!!

Saturday

It was a restless night of sleep but we made it thru. Bryce woke early and kissed me goodbye. He went into the kids room to see if any of them were awake before he left. He found Pierce awake in his bed and said “Pierce, I’m heading up to Salt Lake to the hospital. I think they’re gonna have a new kidney for me.” 

Pierce said in a quiet but excited voice “Whoa Dad. Things are really going to change!” Our kids were so young when this all started (Pierce was 3, Jane was 14 months and Owen was 6 weeks) that dialysis for Daddy is all they have ever known. This will be a completely new way of life and such a huge change for us in so many ways.

Bryce has a PRA (Panel Reactive Antibody) number of 100. This is a number they use to determine compatibility with potential donors. Because he has so many antibodies and antigens in his blood, this means his body will fight and reject the majority of people’s kidneys and/or blood. Less than 1% of the entire earths population is a compatible match. It’s been told to us this is the major reason why it has taken them so long to find a potential donor. Waiting for just such a donor match in the US to die, and then also be healthy enough and meet the criteria to donate was making it nearly impossible. I always joked about how ironic this was because Bryce gets along with EVERYONE! How crazy that his body didn’t feel the same.

Back in January Bryce received a Priesthood blessing from his Dad and brothers. His Dad said “When this transplant happens it will be an absolute miracle.” And we have always felt that would be true. Saturday morning as Bryce turned on the car to head to the hospital, the song on the radio was “All I Need Is A Miracle”. He said that got him excited and from that point on he felt like it was going to work and be the miracle we had waited and fasted and prayed for.

He arrived to the hospital and met Moff. They went to his room and met with some nurses, had an EKG, EEG and a chest X-ray to make sure his heart was up to surgery, anesthesia and recovery. All was a go on our end. The last step was waiting for the kidney to arrive so they could have a chance to look at it and make sure all was in working order.

They visited with the nephrologist and the surgeon and were given some important information about the kidney. We don’t know much about the donor at all but here is what we do know:

-This donor was what they call a DCD- deceased cardiac donor. Brain death patients can have their organs harvested while on life support (with family consent of course) so the organs continue to have blood supply.

With a cardiac death, they withdraw care and wait for the patient to pass. This can mean that some of the organs go minutes without blood flow. Of all the organs the kidney rebounds from this the best. This kidney was without blood for 15-16 minutes. Because of it being without blood for several minutes however, this can sometimes make its function slow on the uptake after transplant. So he may still need dialysis for a couple weeks to couple months until it starts kicking in full force. 

-The donor was also Hepatitis B positive meaning they had the bacteria and had been in treatment for it at some point. Bryce has been inoculated so they weren’t overly concerned about it. Plus Hep B is pretty easy to treat and manage. A small concern compared to finding a compatible match for someone as difficult as Bryce. He will take a medication for about 6 months that should keep him safe from any issues. But like I said it’s easy to treat and manage. So should we need to change treatment for it later on that is very manageable. 

Both of those were small risks to take because this was a 100% match for Bryce. The doctors and surgeons could not believe we got such a perfect match for someone with a 100 PRA! Almost unheard of. This gave us confidence to proceed and move forward. The kidney came from Massachusetts so there was some waiting time for it to arrive. 

They prepped him for surgery. I was finishing up the baby shower at home and getting things packed for the kids to stay in Salt Lake with some friends overnight. But Moff was SO good about keeping me informed every step of the way and even recording the whole conversations with the doctors- she was amazing! And invaluable. I was so so thankful she was there.

As JoDee was telling the boys it was time to leave and said “Let’s go guys! Its Transplant Day!” Owen responded so seriously “But JoDee, somebody that someone loved died so that we could have this kidney. So it’s also a sad day.” I was proud of him for remembering what we had talked about. It’s not a sad thing for us and I don’t want to make them feel guilty or that they can’t be happy. I just want them to be aware of others sacrifices for us so they are grateful and to help them develop compassion.

I arrived about 1:15, they took him back at 1. Moff and I had the waiting room almost entirely to ourselves. We got a call from the OR when surgery started that he fell asleep just fine and the kidney looked pink and had good color so they anticipated it going well. 

Around 5:30, the surgeon Dr. Fujita came out and visited with us. He said surgery-wise it went great and there were no complications. The kidney was a good pink color. A little small but that’s not a problem as it will grow in size to accommodate Bryce’s needs. He said their concern now is getting it to “wake up” and start working. He mentioned again that it might take a few weeks of dialysis and some work to get it up and running like it should. The way he said it made me think it would be a gradual thing- that he would go from needing dialysis 3 times a week to maybe twice and then just once a week. We will see where it goes from here. 

After he left Moff and I knelt down and with tears streaming down our cheeks she offered a sweet, sincere prayer of gratitude. It was a very tender experience. We collected our things from the waiting room and headed up to Bryce’s hospital room to wait for him.

The nurses in post-op called up at about 6:30 and said they were having a hard time keeping his oxygen up while also giving him enough pain medicine to keep him comfortable. They asked for his CPAP mask, hoping that would help him breathe better when he dozed off. At 6:45 the post-op/recovery nurse called again and said he was ready to go but they were going to wait to bring him up until after shift change at 7 so that it would cut down on some of the craziness.

JoDee arrived with dinner at about 7 and we spent some time visiting with her. She needed to get on the road back to Clifton but wanted to wait and see Bryce if she could. At about 7:40 they brought him in. He was in rough shape- a LOT of pain because they had to back off the dilaudid to get him to wake up and breathe well. His color was good however and while I know he didn’t FEEL good, he looked pretty good. I was so glad it was over and we were on this side of it, but he was feeling too much pain to appreciate much of anything other than a morphine drip!

His nurse came in and we were able to get him going on his patient controlled dilaudid. It took a little while to get it under control but he hung in there. He was super thirsty but couldn’t have anything to drink just yet so he had to get his water from those little sponge swans but as usual, he was a champ. He was able to drink some water when he took pills, but only then.

His catheter bag did have some blue liquid in it- methalyne blue which they used in surgery to make sure all the veins and lines were closed and nothing was leaking. We laughed that he was a true Cougar fan- he didn’t bleed blue but he DID pee blue!

JoDee hung around for a little while, Bryce sat on the edge of his bed with his feet dangling to the floor for a little bit, but mostly rested in bed. He started to perk up after a couple hours and we played a quick round of Heads Up! because he didn’t want to doze because then he wouldn’t stay on top of his pain medicine and he’d wake up really hurting. So it was nice to have JoDee and Moff here as a distraction for a while. We settled in for a long night- we knew they would be coming in often to check vitals and do blood work and all the other things they have to do. 

I pray we never forget this experience; That we use it as a reminder of how fragile life is and how it can change at the drop of a hat. That we should be grateful for our good health when we have it. That we cherish the time we have been given with those we love. That we remember the help and support of our incredible village that have held our hands, lifted our heads and walked with us thru the dark days and the bright. I pray we will have the chance to pay it forward and give back to those that have helped us and those who maybe we don’t even know yet, but who will one day need our help. 

“Because I have been given much, I too must give.”

The Next Big Step

Where do I even start? Goodness, so much has happened in the last 36 hours! As with most miracles, it started long before we even realized it was happening.

Friday the 23rd started like any other Friday- Pierce off to school, Bryce went in to dialysis. He called me about 12 and said “Ashley (our transplant co-ordinator’s assistant) called and said they might have a kidney for me. They have to wait for the bloodwork to arrive. She said they should have more info for us in about 4 hours.”

Deep breath. Hold the excitement. Okay. So we wait. And make plans for a series of events that might not happen. Sounds familiar. We sent info on to our families and a few close friends to have on alert in case we heard anything.

At 1:30 I went to get Pierce from school and when he got in the car I explained to the kids that we got a call about a maybe kidney for Daddy. They all got so excited. In my efforts to temper their expectations I reminded them it was just a maybe and that it might not be a match for Bryce which means it will go to someone else. I then explained that this kidney was coming from someone who had died; We didn’t know if it was a man or a woman, a mom or Dad or brother or Aunt. I asked that in our prayers we would remember the family and loved ones of this donor. It was one of the most sweet and tender moments of my life to listen to my children pray for blessings of comfort, love, and peace for these complete strangers that were making such a selfless sacrifice and changing our lives. Their simple and complete faith gave me strength and so much peace.

I spent the afternoon trying not to think about it and keep myself busy. I did okay for a little while until he arrived home around 4 and said Ashley had called him back and said they still didn’t know more. The blood work hasn’t arrived yet and was coming from out of state. She said shift change would switch to the weekend on-call nurse at 6 and we should get a call about then. We started to go a little stir crazy so we took the kids out to dinner at Blaze Pizza to try and distract us before coming home and watching some Olympics.

By 9 o clock he called them and left a message for the on-call nurse to call us back. At 9:20 she called and said everything on the initial blood work looked good. He was given instructions to go to the IMC in Murray at 8am the next morning for final blood work and some other last step tests.

I was hosting a baby shower the following morning at 11 and since we were afraid to get our hopes up and plan on it too definitely, we decided I would stay and do the shower while Bryce attended his last minute testing and would have Moff (his sister) with him. We were told if he was given he green light for the transplant then the surgery would take place later in the afternoon. We felt confident this would allow me to fulfill my obligation of the baby shower and still be able to be with Bryce should the surgery take place. Since we only have one car I was planning to ride the train up with the kids to the hospital (the train goes right to it) but at the insistence of JoDee (our friend from Bryce’s hometown who was in Provo visiting) she said she would come and get the boys during the shower and then take us all up to Salt Lake. 

It was hard- I wish we had known from the beginning that it was going to work out because then we could have enjoyed it more. Instead we had to lower our expectations at every step in case it didn’t pan out. We’ve spent so much of this time worrying that it won’t and bracing ourselves for the worst that it’s robbed us of a little bit of joy. But such is life sometimes. I’m sure there’s a lesson and analogy in there somewhere but I can’t connect the dots right now. Regardless of it having a little less happiness than we want, we are still immeasurably grateful. So many hundreds of little miracles and small pieces had to fall into place for things to work out the way they have. We know it’s not just a coincidence and no one could convince us otherwise.

For today I’ll end with one of my favorite quotes from Elder Jeffrey R. Holland 

Steps in the Right Direction

Well I know I'm skipping a lot of days here but there wasn't a huge amount of change from day-to-day at this point. He was moved from ICU to the Progressive Care Unit on Saturday the 31st. I would say those nurses were not nearly as good as the ICU nurses; In fact probably some of worst nurses we've had (and we've had a LOT of nurses!) One of the CNA's told him it wasn't her job to help him take a bed bath- that is EXACTLY her job! So he had to wait all day for me to get there (and that was on a Sunday so I didn't get there until almost 6PM). By this time that aid had left but I was livid. The hospital will absolutely be hearing from me about it. The nurses all just acted like it was a bother that we were there or anytime we needed anything. They weren't proactive and always spent the least amount of time with us that they could. He was only there for two days and then got moved up to the 7th floor where he could have a few less monitors attached to him and be one step closer to discharge.

Tuesday PT came and brought some therapy stairs to his room for him to attempt the stairs and see if he was strong or capable enough to attempt them. He wasn't. At that point they determined that he would need to be moved to a skilled nursing/rehab facility for a while until he could get back to normal mobility. Our ward had been amazing for help: prayers, fasting, watching the kids, meals, doing our laundry. But I knew with Pierce starting back to school the daytime schedule was going to get more complicated to arrange and I knew people in our ward had lives and jobs and responsibilities to get back to. I decided to call in reinforcements: The Mumford's. I called Kate, explained that this was going to take longer than we'd planned and could they keep the kids for a while; "Yes!" was her answer, "We have been waiting for you to call and tell us what we can do. We'd love to take the kids and we can keep them as long as you need." I was so relieved I cried. That was such a load off for me. I took the kids to Salt Lake Wednesday morning and they drove up with Moff who was headed that way for Miles' 1st Birthday. Our kids and their stuff filled her car to brimming but she was so happy and willing to serve us.

We met with a social worker at the hospital and looked at a list of facilities for Bryce that were covered by our insurance. We'd never had any experience choosing one so this was uncharted territory for us. We chose one location in Orem, very close to Provo but when we heard back from them there were some issues regarding medications Bryce has to have and transportation for him to and from dialysis. They were unwilling to work with us on either so we moved to our second choice, Stonehenge in American Fork. There was a Stonehenge location in Orem that came very highly reccomended but it did not accept our insurance so we chose the other location. They also had issues initially with two of Bryce's essential medications that are expensive and difficult to get (most pharmacies don't carry them, we have to order them by mail) but they allowed us to bring our own supply so we got that taken care of. They had to make several calls and changes but they were also able to work out the transportation to and from dialysis for him. The last step was getting the green light from insurance (after they'd done the paperwork), and that took a day and a half longer than we were planning on.

Today at 2 they came and got him moved to our new facility. It's nice and clean and spacious, the rooms are private but have two beds so I can spend the night if I want. The staff has been helpful and answered our questions and concerns. Administrators have their doors open for anyone to ask questions or visit with them anytime. Bryce manages to get to the bathroom with just the help of his walker and shower by himself (sitting in a shower chair) for the first time in almost 2 weeks. Bed baths are just not the same as a hot, running water shower with soap! He's resting and watching TV in his room now.

The kids are having a blast in Idaho- the kids there have had snow days for the last two days so it's just been fun, fun, fun! Kate volunteered to try to potty-train Owen (she's so brave and awesome for even being willing to try!). They're loving it and in such good hands; we are so thankful for those amazing Mumford's! They also bought me a gift certificate to get an hour massage and a pedicure at a local place so I can take a break and relax. They continue to support and love and help and go above and beyond to make our lives easier.

I've been thinking the last few days about how challenging this whole experience has been, pushing and stretching me in ways I haven't faced before. And yet it hasn't been as hard as some would expect. While I wouldn't wish this experience on anyone, I want the overwhelming feeling of love and support and outpouring of goodness to be felt by everyone! Everyone should know how it feels to be surrounded by everyday angels and lift you and those you love and carry you in ways you can't possibly imagine. THAT is something everyone should have in their life. It's strengthened me now and I know it will continue to strengthen us later as we look back and draw on the overwhelming love we feel. That is life-changing.

Kids finally got to see Daddy on New Year's Eve! Happy New Year!

Sweet little New Year's notes from Pierce and Jane

Ringing in 2017- PUH-LEASE let this be the year of the transplant!!

Our old neighbors in Spanish Fork took the kids for a sleepover one night and it was awesome!

 Moving further every day with PT

Breakfast of Champions- Honey Nut Cheerios!

Heading to meet Aunt Moff and go to IDAHO

All in a days work...

Love this sweet bedhead boy

Janie and Hattie made an indoor snowman

Cousin snow day snow party! Indoor snowmen and snow cones

Settling in at Stonehenge AF

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.