We escaped to our happy place today in the Uintas. We missed a bunch, caught a bunch and got really sunburned. 🥵.   The sights, sounds, smells, and just plain beauty were just what we needed.  

Brent is doing much better. He has been going to cardio rehab twice a week. He walks over a mile every day and is getting stronger. Yesterday he finished his IV antibiotics which is good. Maybe now he can get his appetite back. He is also back to work which is good. 

This has certainly been a long haul for him. He is used to crashing hard but bouncing back fast. This time threw us both a curveball as he faced setbacks and disappointments. It has now been eight weeks since his heart attack and valve replacement. As we were driving up the mountain we noticed that the leaves are changing. We both commented, “how can that be?!  It’s still March!”  We feel as though with covid and three hospital stays we have lost so much time and all of Summer. It’s so bizarre to think that it is Autumn. 

We understand and acknowledge that we are so very blessed. We know that Brent has been given the gift of life oh so many times. We do not know or comprehend why, but give thanks daily for this gift. We can not even begin to express our gratitude to our Father in Heaven, our family, and our dear friends for all that has been done for us. Just know that you hold a special place in our hearts. 

We love the words ‘cautiously optimistic.’

 Yesterday we met with Dr. Caine for a six week check up. Brent was cleared to drive and cleared to start to go back to work. He’s been doing pretty well since his last thorocentesis on Thursday. The chest X-ray yesterday didn’t show any new accumulation of fluid around the lungs, thankfully. His heart rate has stayed stable also since replacing his Hickman central line on Friday. Personally, and in my semi-professional medical opinion, I believe they are all related. I believe the fluid keeps moving the line out of place, thus causing the heart rate to go crazy. The line is placed right next to the heart, and any movement can cause irregular heart rates. 🤷🏻‍♀️  I don’t have a medical degree, just an honorary surgical degree awarded to me by Dr. Price (our GI surgeon.) Now that the fluid has been drained, and the line once again fixed, things are looking up. 

We often use the words cautiously optimistic to describe any amount of positive news because we’ve just been burned so many times. 

Brent will have another chest X-ray next week to check on the fluid. Here’s praying that it stays normal. 

He had an echocardiogram today to check to see if there is any vegetation on the new valve. We see the Infectious Disease doc on Thursday. Also praying for that to be normal so he can discontinue the IV antibiotics and have a desire to actually eat. 

We are thankful for good days. To be honest, we are just thankful for more days. 

Well, since Monday's thoracentesis where they drained a liter and a half of fluid, we've had a busy week. Monday mornings x-ray showed his line had moved once again into the wrong place. After the thoracentesis the x-ray showed it had moved back into the right place. We were totally baffled. Tuesday he was supposed to start cardio rehab at the hospital but his heart rate was too high, so they couldn't do anything. Same thing happened on Thursday. So, no cardio rehab this week. Poor Brent says he failed cardio rehab. :( 

On Tuesday we tried to set up another thoracentesis to drain the last of the fluid off of his lung. Low and behold, IHC's central scheduling system was down. FOR THREE DAYS! So frustrating. How can such a huge corporation, especially medical, not have a back-up system? We finally worked with Dr. Caines office to have them schedule it. We ended up having to go to Riverton Hospital to do it, which was fine. They pulled another 1.375 liters of fluid off. Here's hoping and praying that it stays off and doesn't reaccumulate. BUT, the x-ray after the thoracentesis once again showed that the line was in the wrong place. What the heck? In 14 years, we've never seen this and it just keeps happening. Soooo, STILL not able to schedule anything through IHC, our awesome PA/nutritionist finally got him scheduled for this afternoon. He's now sporting another new central line. The nurse we had before they took him back was awesome. She wrote on the white board under 'goals'
STOP THE FLOP! Here's hoping. He can't keep missing his nightly TPN. He's losing too much weight.

Last night was the first night he has not needed oxygen. He also hasn't been using it during the day for a couple of days. That's awesome!

If you love salmon, you should be really jealous. Tonight is the annual Payson Salmon Supper. Google it. It's amazing.  We are just getting ours and bringing it home due to Covid, the heat, and Brent still recovering. Can't wait. It's seriously the best salmon we have ever had. People come from all over the state for this, some on buses.

Anyways, we know that we are blessed with good and amazing people all around us. We truly have a great medical team that continually go to bat for us. We have so many prayers being said in our behalf. We don't know why we continue to be so blessed. We know that miracles come in all sizes and shapes, and often aren't the miracle we were expecting, but miracles nonetheless. We have dear friends that are facing the loss of their husband and father of six children (ages 2-14) to a very aggressive pancreatic cancer. Their's and hundreds of others' prayers for his life to be spared or extended have not been granted, and he is now on hospice. It is heartbreaking and hard to accept. This is a family that is loved by so many, and who serve others quietly and abundantly. They bless the lives of so many. I know that they have seen tender mercies and miracles. In Tim's words, "a miracle in this case may be an extension of my own life, or it may be getting someone to pray that has not prayed in years. My deepest hope is that it includes strength coming to my wife and children as they suffer the brunt of the emotional, psychological, financial, etc effects of the next months and years."  Brent and I are struggling to come to terms with this. We wish we had answers as to why. Why do some of our sweet friends and family have to suffer so much? Why have so many of our friends had to go through the loss of a sweet baby, a son or daughter, or a loving spouse? It just breaks our hearts. To those suffering, mourning, or who need extra strength, please know that you are never alone. We know without a shadow of a doubt that our Father in Heaven is mindful of you. He knows you. He loves you. He will grant you the strength and peace that you desperately need. He has done that for us. So many times. We are eternally grateful.

So, yesterday began with a chest X-ray due to Brent coughing all night. It ended with a trip to the ER in Provo to have another thoracentesis where 1 1/2 liters of fluid was removed, with another liter that still needs to be removed. They can’t pull that much fluid off all at once or it causes other problems. The chest X-ray also showed that his new central line was again in the wrong place and had moved since being inserted last Friday. So, no TPN again last night. We are truly baffled at why this has now happened twice when he has never had this happen in 14 years of having Hickman tunnel IV’s.

Can’t wait to see what today brings...

We are tired. Like, really tired.

A lot has happened since my last update. A lot of weird, scary, frustrating stuff. Brents oxygen levels have been low still and he was switched from just oxygen at night to oxygen all of the time. He has had weird pain in his back, but the nerve pain in his arm is much better. He has been short of breath and coughing. All of these things are fairy normal after open heart surgery, but all of these things together are not.

Rewind a few days. Our family goes to the Uintas every year and this was the week that I reserved clear back in January. I reserve the best spot in the campground at Moosehorn, which is up by Mirror Lake. When all of the heart stuff started in May we figured the trip would just be canceled. The kids, however, still wanted to go so I didn’t cancel the reservation. With Brent not doing super well since surgery I had no plans of going up. Because we have the best family and friends, I was able to go up for a few days. Dennis, Brents brother who is a Dr offered to come stay with Brent. Dan Cunningham, our friend who had the space next to us for the week offered to drive the trailer up and back. I don’t often take people up on their offers of help, but this time I did. I knew deep down that I needed a break. So, Dennis drove up from St George on Sunday and I passed my nurses hat on to him.

Dennis did more in those three and a half days than I can ever thank him for. He was on the phone asking questions and getting answers. Come to find out, Brent had fluid in his lung which was causing the pain, low sats, and shortness of breath. They arranged for him to have his lung drained on Thursday. On Tuesday Dennis drove him up to our camp and they stayed for a little while due to Dennis arranging portable oxygen tanks. Tina had to drive down to kamas to dial in to a zoom meeting for her school and while down there got a call saying that Brent had a really bad night and that they were doing the thorocentesis immediately. They drained 1100 cc’s of fluid off of his left lung. That’s a lot of fluid folks. He’s already feeling better and last night he actually slept longer than he has in months. However, while doing the thorocentesis, they noticed that his Hickman central IV line was misplaced and not even draining into the right side of the heart! Not quite sure how that happened or how he even made it out of the hospital without someone noticing that. 😡. So today we are at Utah Valley and he just had the central line removed and a new one put in. Ay-yi-yi.

Here’s what we are hoping. . .

1) that by draining his lung, the problems with breathing, pain, and fatigue are solved.

2) that by replacing the line he can resume his TPN tonight and not get dehydrated.

3) that the combination of these things solves his low oxygen levels and he can get off of suplimentary oxygen.

4) that the misplaced line was causing the heart rate fluctuations and that by replacing it, his heart rate will normalize.

5) that Brent can now regain his strength and get back to doing normal things like smoking meats and camping and working. 😊

We are so thankful for modern medicine, prayers, and people and medical professionals that care. Our hearts are full of gratitude and love for those that are willing to be on call when I’m gone, for Dennis being willing and actually enjoying being a caregiver and using his Dr skills and knowledge. He said it was great brother bonding time watching John Wayne movies. I know he didn’t get much rest while he was here, too worried about Brent and how he was doing. And thanks to Dan for driving the truck and trailer up and back AND emptying the tanks. He went above and beyond in the friend area. (It was also fun to have them up with us for a couple days.)

We have lots of follow up appts in the next couple of weeks. Here’s hoping all goes well from here on out.

Love you all.

Once again, I apologize to those of you wanting an update. It’s been a long couple of weeks just trying to figure out what our new normal is. It changes all the time. I have a love/hate relationship with change.

Brent IS improving. It is slow and frustrating for him. He is still pretty weak and in pain. We did switch pain meds and that seems to have helped. He also now has oxygen at night to keep his sats up. We are fairly certain there is some kind of nerve damage in his arm where they used the artery for the angiogram after his heart attack to remove the piece of vegetation that broke off from his valve and also used the same artery during surgery and post op for the heart monitors. The pain in his arm has been more bothersome than his cracked sternum and incision. We got a Tens unit to administer electric stimulation and that seems to relieve the pain in his arm for awhile.

We have a cardiac physical therapist coming to the house three times a week to try to build up some stamina. That will switch over to going to the hospital outpatient for cardio rehab. We go for a short walk down the block every night.

We are so blessed with family and friends. Without you we couldn’t do this. You buoy us up in ways that bring us to tears and to our knees in gratitude. Seriously. Thank you.

Well we ventured out today and had to drive to IMED for Brent’s first Post-op checkup with the cardio surgical team. They said everything looked good. He’s been having excruciating pain in his arm which is the arm they went in for the angiogram and also the monitors. He will have an arterial ultrasound on it tomorrow to see what’s going on. Hoping to rule out thrombosis. Also hoping it’s not nerve damage.

It’s been an adventure getting on top of pain management. Had to switch pain meds. The pain meds are causing his oxygen sats to drop during the night, so we’ve had oxygen delivered to use during the night. Hopefully now we can get some sleep.

We just need to work on some physical endurance and that’s going to take some time. All in all, Brent is healing from the heart attack and subsequent surgery. It hasn’t been one of his normal ‘crash hard, recover fast’ events. This one is just going to take time and patience.

Still humbled by your love and prayers and friendship.

Sometimes no news is good news. Sometimes I just forget that I need to update the blog. Sometimes I’m just too tired. Today it’s probably a mixture of all three. I’m too tired to remember to post an update to tell you that he’s ok. 

And by ok I mean that he’s still at home recovering. He’s still in a lot of pain and we are trying to figure out pain management. He’s also quite weak. We knew this one would not be a bounce back recovery. Patience is not one of our virtues sometimes. 

We are still mindful of our blessings each day. Some of our dear friends and neighbors are going through much worse right now. We all have our own trials to push through. Our trials are not any worse than anyone else’s even though it seems like it some times. One of our family sayings is “Oh, then the clouds opened up and God said ‘I hate you, Alfalfa!’” But then other times we remember the scripture in Doctrine and Covenants 121:7-9 “My son, peace be unto thy soul; thine adversity and thine afflictions shall be but a small moment; And then, if thou endure it well, God shall exalt thee on high; thou shalt triumph over all thy foes. Thy friends do stand by thee, and they shall hail thee again with warm hearts and friendly hands.”

If you’re still hanging in there with us, what to pray for? Pray that we can figure out a pain management that works, pray Brent can rest and sleep. Pray for the end of Covid-19, especially hospital visitor restrictions, as my friend is fighting for her life alone in the hospital. That’s just wrong on so many levels. 

Thanks for checking in. We love you. Lots. 

YES, Brent was released yesterday afternoon. I’m sorry I did not update. It takes a lot to get things settled.

Brent had his Hickman IV tunnel (central line) put back in yesterday morning and then it was just waiting until they got all of the paperwork and meds ordered. He came down at about 2:00 to Brenda, Michelle, and Tina with posters. And me with tears.

Then came home to Joseph and Erin and the kids with posters and grandbaby smiles.

We always have such a turmoil of emotions when Brent is released from something as big as this. So very grateful he survived and is coming home, but so very fearful of something going wrong at home.  Which, I might add, is valid because you know, “been there, done that, got the t-shirt.”

Thank you to our dear friends willing to drop everything to come give him a blessing. We love you.

We made it through the night with little sleep but are planning on a quiet day today.

So many thoughts, emotions, wishes, etc. for now, know that we love you. We are mindful of your prayers, we are blessed because of you. You have blessed our lives in countless ways and in countless times.

Grateful to be reunited.

Brent has been doing pretty well today. They are transitioning from hospital meds to home meds in the hopes that he will come home tomorrow or Friday!!! Let’s pray for things to continue to improve with no unexpected setbacks. I am a firm believer that true healing only takes place at home. It brings a level of anxiety with it, but we will deal with it as it comes.

Tune in tomorrow to see if he gets sprung. 🙏🤞❤️

Also, to our friends and neighbors that contributed to the gift that Janice arranged, be assured that the gift cards have come in so handy. I cry whenever I pull them out and decide where to eat today. Thank you a million times over. We love you and are in awe of your love and generosity. And to the friends from OIT, the flowers were beautiful. Thank you!

We are thankful for the prayers being said in our behalf. Last night was the first night I actually slept since last Tuesday. Brent had a relatively quiet night also. (A true quiet night is not even possible in the hospital.) His heart rate stayed below 100 most of the night and the cardioversion was not necessary today. He has been up walking today.

The Drs are starting to transition him from the treatments and meds that he’s on right now to the things he can do and have here at home. Granted, we are experienced enough to do so much more at home than most people. He will start over on the six weeks of IV daptomycin and other medications to try to ensure that the new heart valve is staph-epi free. Infectious disease has to decide when he can have his central line put back in. He currently has a PICC again. I might be putting my nurses hat back on sooner than I thought I would.

I don’t share some things on the blog, even though it seems I share too much sometimes. Some things are too raw, sacred, and too messy to share. I do want to share a couple things that bring me peace. We usually go to sleep listening to peaceful music. The song Be Still My Soul is the first song on our playlist. So many times I need to step back and just be still. It is then that we truly can feel the healing peace that the Savior offers.

Be Still, My Soul

1. Be still, my soul: The Lord is on thy side;
With patience bear thy cross of grief or pain.
Leave to thy God to order and provide;
In ev’ry change he faithful will remain.
Be still, my soul: Thy best, thy heav’nly Friend
Thru thorny ways leads to a joyful end.

2. Be still, my soul: Thy God doth undertake
To guide the future as he has the past.
Thy hope, thy confidence let nothing shake;
All now mysterious shall be bright at last.
Be still, my soul: The waves and winds still know
His voice who ruled them while he dwelt below.

3. Be still, my soul: The hour is hast’ning on
When we shall be forever with the Lord,
When disappointment, grief, and fear are gone,
Sorrow forgot, love’s purest joys restored.
Be still, my soul: When change and tears are past,
All safe and blessed we shall meet at last.

Also, I was reading this talk today.

https://www.churchofjesuschrist.org/study/general-conference/2020/04/53gimenez

This stuck out to me:

“President Russell M. Nelson taught that “Saints can be happy under every circumstance. … When the focus of our lives is on God’s plan of salvation … and Jesus Christ and His gospel, we can feel joy regardless of what is happening—or not happening—in our lives. Joy comes from and because of Him. He is the source of all joy” (“Joy and Spiritual Survival,” Ensign or Liahona, Nov. 2016, 82).
Of course, it is easier to say these things when we are not in the midst of a storm than to live and apply them during the storm. But as your brother, I hope you can feel that I sincerely want to share with you how valuable it is to know that Jesus Christ and His Atonement are the refuge that we all need, regardless of the storms that are battering our lives.”

I’m full of gratitude for my Savior.

Not a whole lot to update today. It was a rough night with no sleep for either of us. He texted me at 1:30am saying his heart rate was high. One would naturally worry after having a heart attack and open heart surgery. Go figure. He was also in pain. I was listening in on the whole thing on the phone. The PA didn’t seem too concerned, meanwhile I’m freaking out. He thinks it is caused by the pain.They administered Toradol and a drug to bring the heart rate down but it kept going back and forth. They did an ekg and determined it wasn’t an svt, but most likely just a flutter. Today Dr Caine said if it doesn’t level off by itself by tomorrow morning they will cardiovert the heart, which is essentially a reboot. They stop your heart and start it again hoping to regain a normal heart rhythm.

We are mentally, physically, and emotionally exhausted. We need sleep and a normal heart rhythm.

Thank you to our angel neighbors who mowed and weeded the garden this morning while I was still in bed having a mental health day. I love you. ❤️

Thanks also to all those helping Tina move into her new apartment tonight. You’re the best. 💞.

Here’s hoping for sleep and a quiet night for Brent at the hospital.

July 6 th is a rough day for us. Last year on July 6 th was the day Brent went into septic shock and I was told to call the family in to say our goodbyes. Obviously he survived that bout of sepsis but it left us pretty emotionally unstable. So glad he is still here on earth on this July 6th. 💞

Happy Sunday. I hope everyone is able to find peace and reverence today as you enjoy your Sabbath.

There is not really a lot to update you on. Brent is just working on recuperating and getting some strength back. He is still in a lot of pain, very tired, and very nauseous. It’s a vicious circle of needing the maximum amount of pain meds that then cause the nausea. And then everyone knows that you just do not sleep in the hospital. I feel like that really hinders people’s ability to heal.

Brent is slowly losing all of the tubes. He was extubated three hours after surgery, they have removed the lines in his neck (I think, now I’m doubting my memory), and are removing the chest tubes today.

I feel like now he just needs time and energy to heal. Dr Caine said that the second time around is a little more complicated. Brent’s brother, Dennis (Md.), says it is normal for him to be more weak and tired due to the heart attack and the stress and temporary damage done to the heart. There was no permanent damage done to the heart muscle due to the heart attack and the angiogram they did to retrieve the broken off part of infection showed that his arteries were clean. I think we just need to be more patient and understand that this was very severe.

What to pray for? Pray that he is getting the care he needs, from nurses and Drs who are willing to listen to him and act promptly. Pray that his pain will be relieved. Pray that he can rest and heal. Pray that his Crohn’s can be kept at bay. That’s a whole other complication right now. Due to everything going on with the line infection that led to all of this his monthly stelara shot is a month late and his body knows it. The fact that he is now on blood thinners really is not good for a Crohn’s patient. Pray for him to have an appetite to maybe buffer the effects of the meds.

We are still in awe of the miracles we have once again witnessed. Dr Caine was a recipient of divine intervention as well as Brent. There were decisions made during the 8 hour surgery that he was guided to make specifically for Brent and his body and condition. The fact that Brent has survived the heart attack and valve replacement is miraculous in and of itself. The fact that I haven’t been arrested for breaking down the door of the hospital is also miraculous. I’m not joking. Seriously. It kills me knowing that things are happening that shouldn’t and wouldn’t be happening if I were there.

We are mindful of our blessings. We are united as a family. We feel of your love and prayers. You know, I’ve seen people say things like, “don’t say your thoughts and prayers are with someone, that means nothing. DO something real and tangible.” I strongly disagree. There is not much tangible that anyone can do for us right now. Yes, the lawn needs attention, yes, the garden looks horrible this year, yes, there are things that could be done on the house. But guess what? Those things aren’t important. What is important is knowing that we have this huge support system in place. What’s important is knowing that you all are invested in our lives. What’s important is feeling the real power of prayer and love and concern. And we do. We honestly do. We feel the love from our families, our friends who we consider our family, our neighbors and ward and stake family, and our BYU OIT family. This is why Brent is still here. This is what gets us through this imperfect mortal life. This is why we not so silently weap our tears of thanksgiving. It’s the love of our Father in Heaven, our Savior Jesus Christ, and you.

Today has been a rough day for Brent. He did move out of the ICU onto a normal cardiac floor. (He did not walk out this time. It was too far.)

Brent is in a lot of pain. The pain meds don’t seem to be very effective in giving him relief. Having to be his own advocate, less than 24 out of surgery sucks. He did have the nurse call Dr Caine and he switched him over to PCA

Description

(Patient-controlled analgesia is any method of allowing a person in pain to administer their own pain relief. The infusion is programmable by the prescriber.)

Hopefully he can get on top of the pain now. 

I finally came home tonight. It was very comforting for me to be surrounded by all of my children, daughter in laws, grandbabies, and Brents brother Dennis. Thank you to Michelle for letting us all converge on her house since it is close to the hospital. The stress and tension were high as we all waited for word from the nurse throughout the surgery and then Dr Caine when it was over. When that call came we sobbed, hugged, and gave thanks to our God for one more miracle. 

I don’t like being separated one bit. Could you all please do whatever you can to stop the spread of Covid? Thanks. 

Please pray for relief from the pain he is in. Pray that his nurses will be mindful of him and his unique circumstances and health history. Bless them to listen to him and act accordingly. These are the things that I advocate for when I am allowed to be with him. It kills me to not be able to do that. 

Much love and thanks to all of you. 

DescriptionPatient-controlled analgesia is any method of allowing a person in pain to administer their own pain relief. The infusion is programmable by the prescriber.”

Brent had a rough night with a lot of pain. BUT HE HAD ANOTHER NIGHT!

He’s texting me this morning. He says they will move him out of icu today. So crazy.

I was trying to upload a picture the nurse took last night but my phone won’t let me. I just wanted you to see the proof that he is alive and that your fasting and prayers and good vibes and thoughts do work. Modern day miracles do still occur. Brent has proven that time and time again. He continues to defy all earthly odds. We are continually blessed even in the midst of our faith shattering trials. We often curse as our trials are heaped upon us again and again and again. Our lives are continually turned upside down and all around. We question our faith. We cry tears of frustration, fear, and anger. We wonder why this burden can’t be lifted from him. But then we witness miracles. Our cups are refilled, our meager faith is restored, our family is united in prayer of thanksgiving, and maybe, just maybe we can get some sleep.

Here’s hoping for relief from his pain, which is actually in his shoulder. Here’s hoping that he has a good, frustration free day. Here’s hoping that the nurses and doctors are tuned in to his needs and pay attention to him. Here’s hoping that you are all blessed for your love and kindnesses.

I spoke with Brents nurse and he is doing well. No blood pressure problems and vitals were good. He already was extubated. AND HE JUST TEXTED ME!!! Short and sweet, BUT HE TEXTED ME!!!

Now on to the recovery part. I told him before he went into surgery that he was not going to try to beat his accomplishments from the last time he had open heart surgery....he walked out of the ICU 24 hours later and to his new room. We need to take it slow and easy.

Our emotions are shot and we are all physically exhausted but we are so full of gratitude for yet another miracle in our lives. Prayers are real and we have felt them. There were a couple of times during surgery that Dr Caine had to make some non textbook decisions. I know he was guided to do the right procedures for Brent. Here’s hoping we all can rest better tonight. Praying for Brent and his pain levels and his rest. 💞🙏

With gratitude in our hearts we are so thankful for the phone call we just got. Brent is out of surgery and awake. He is intubated. Dr Caine said he is in the ICU and that all went well with only a few complications. Brent has switched from having a pig valve to now having a cow valve. There was a lot of scar tissue to work through. There was still vegetation on the valve so it is a good thing we didn’t wait. The first heart attack did no damage to the heart muscle but who knows what another dislodged piece could have done.

Our hearts are so full of gratitude. For so many things and so many people. Now we wait and pray for a complication free recovery. There are still no visitors allowed so we pray he will get the care he needs.

We are thankful for Dr Caine and his knowledge, wisdom, expertise, and love.

Just got the call saying he was off of the heart and lung machine. He said the new valve looks good and so far everything looks good. Guesstimates another hour and a half. I’m cautiously breathing a little bit easier.

Just got an update from the nurse in the OR. He is now on the heart/lung machine and they are working on replacing the valve now. He said vitals look good and everything is going well. He will call again when they remove him from the heart/lung machine. Thanks again for the many prayers. It’s very nerve wracking that’s for sure. 💞

So Dr Caine just called and they are just getting started. I told him that so many people were praying for Brent AND him and he was touched. The surgery is expected to take at least 6 hours. I will update when I have news. Many thanks to you for fasting, praying and sending us all your good vibes. It’s going to be a long day. Brent sent me this scripture last night.

31 “But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.” (Isaiah 40)

So I’m not really sure which direction my roller coaster is going right now. Is it that moment when you’re slowly going up and you’re filled with fear and trepidation? Is it the out of control wind through your hair screaming as you are falling downward? Or is it the flying uncontrollably derailment? Whatever it is I want off.

We were blessed to have Brent come home yesterday. It’s always nerve wracking because, well, just because.

Today I rushed him to the ER with severe chest pains. The ER in Provo. Nuff said.

They determined he was not having a heart attack but could not figure out why he was in so much pain. They consulted Brents cardio team in Murray and they all decided he needed to be transported to IMED. He got a nauseating ride in an ambulance to IMED.

Covid sucks. Nuff said. Not looking for pity, just being raw and honest. I sat outside the ER doors and sobbed uncontrollably. Joseph came. Tina came. We all sat there and waited.

The Dr called me and explained what was happening. He was getting ready to transport him. I asked if I could say goodbye. He came out and got me and we were able to say our goodbyes. We saw the ambulance arrive and waited until they brought him out and waved and yelled. The paramedics waved me over, said not to tell anyone, and I got one more hug. So thankful.

When he got to IMED they repeated blood work and the heart attack indicator was now through the roof. He was indeed having a heart attack. We were able to talk and Dr Chan also talked to me telling me what was happening. She said he was headed to the cath lab for an angiogram. Insert a tender mercy here. Michelle got a phone call from her old roommate and friend that she saw his name and stayed to be his cath lab nurse. Thank so much Lindsay.

The angiogram was quick and they found a clot in his front artery. They were able to remove it.

Brent is now scheduled for open heart surgery on Thursday. We can’t risk any more damage to the heart.

This is all just so crazy. It’s frightening. It’s risky. It just plain sucks.

He’s tired. He’s frustrated. He’s scared. And by he, I mean we.

If you feel so inclined, our friend gang is fasting and praying on Thursday. Feel free to add your prayers, good thoughts, vibes, whatever it is you do or believe in. I’m sorry to sound so dramatic all the time. This is a big one. The risks are higher the second time around. He still has staph epi floating around. He’s tired and weak. I pray that he is blessed with the strength and endurance he so needs right now.

Oh what a difference a day makes.

So, when I left the hospital last night at 10:30, we weren’t sure whether Brent would be able to come home anytime soon, or if he would be headed in for heart surgery. Alls we knew for certain was that the visitor restrictions would go into effect this morning due to the rising numbers of covid in Utah. As heartbreaking as it was to leave last night, I drove the 40 minute drive home relatively calm. I thought to myself, wow, someone is praying for me because I should be hysterical right now. (We all know how calm, cool, and collected I am.) not.

We both slept unusually well last night and then I got a text saying he was going to be discharged today. 😳. Ok. It was one of those situations where they weren’t doing anything there that we can’t do at home. We are perfectly capable of doing IV antibiotics at home and have done so many times.

There is still no surgical plan in place to replace the heart valve. We have an appt with our infectious disease doc on Thursday. After that appt we will decide if it is sooner rather than later. Yes, the valve definitely needs to be replaced as he is showing signs of heart failure. However, it is not emergent at this point. By ‘sooner’ we mean in the next week. By ‘later’ we mean within the next few weeks.

As always, the plan can change at any given moment.

There have been many times throughout all of this (the past 14 1/2 yrs) where we have without a doubt felt the power of your love, concern, prayers, positive vibes, etc. so strongly. This has definitely been one of those times. There has been so much uncertainty and despair but just when I feel like I was sinking, someone throws me a life jacket. Someone, somewhere petitioned for strength or peace or sleep or hope, and that petition was heard and granted. From the very bottom of our hearts we thank you. We have a testimony of the power of prayer. The power of friendship. The power of service. The power of priesthood blessings. The power of God.

Is everything ok? Is Brent better? No. Not at all. But we are given the strength and wisdom and power to accept the decisions made and the course that he needs to take. For this and all of you we are thankful.

I’m truly not sure what to post today. We are fighting extreme emotions, confusion, lack of a plan, and just plain fatigue.

Yesterday started out great, with a plan in place to discharge Brent today, remaining on the IV antibiotics and to continue to wait out the original six weeks and then re evaluate the options of TAVR or open heart to replace the valve. Cool.

Dr Caine asked another cardiologist to review the echo, who is a specialist in that area. He came in and said that the valve is definitely failing and needs replacement. He does not recommend the TAVR procedure. He said that the valve is still showing signs of the staph epi. A clean culture just means he is on antibiotics and not necessarily that the valve is clean. He recommended surgery earlier than later. Not emergent though. He was still of the opinion that Brent could go home today unless Dr Caine decided to do surgery Monday, then it would be stupid to go home. The ultimate decision maker would be Dr Caine.

But wait, let’s throw another wrench in the plan. Brent started running a fever last night. We are fairly certain it is another line infection because of the timing of when they started his TPN and when the fever started. His blood pressure was also high. So, disconnected the TPN. Fevers never got worse but never went away either. Still running a fever today. Blood pressure is back down though. Took six people to finally get a peripheral IV in. 🙄.

Dr this morning said they would pull the PICC. She contacted Infectious Disease to see if they should put another in. You can’t run TPN through a peripheral IV. ID said to not take the PICC out yet because the fever could also be a side effect of the daptomycin (antibiotic.) soooooo, who knows what’s going on. They’ve done blood work and are doing some IV fluids.

I stayed last night. I wasn’t supposed to but I didn’t ask. The nurse didn’t even notice till about 3:00 this morning.

Regardless of what the new plan is, today is my last day at the hospital. My stomach is in knots thinking about leaving him here alone. This just doesn’t make any sense to me. Who will advocate for all of these patients now that their families won’t be allowed to be with them? Who will give the medical people information they need to know when a patient is intubated and can’t talk? The nurses are so overworked they can’t do it. Brent is nowhere near a normal patient. I can’t even think about it. But I do. It’s killing me. And I know it’s not about me, it’s about him, but he and I are we. Over the past 35 years I’ve never not been able to be with him during a crisis. Just the thought of him going through open heart surgery and me being either in the parking lot or somewhere else is very emotionally disconcerting.

What to pray for? I have no clue. Guess we’ll see what the rest of today brings.

Quick update.

Not much to report actually. Brent is feeling much better after losing 5-6 liters of fluid since last night. 😲.

We are waiting for the official word on the echo and to see if they need to do a TEE or not.

Preliminary plans are to continue the IV antibiotics at home, along with lasix to keep the fluid off until the six weeks are up. At that time they will re evaluate the heart valve and determine if it can be replaced by doing minimally evasive catheter surgery or full open heart. The valve has been damaged and is not functioning well enough to keep the fluid buildup from happening.

So, being cautiously optimistic about avoiding immediate surgery right now. As for release date, we still don’t know that.

Here’s my soapbox, so you can stop reading now. I won’t be offended. I won’t even know!

When I leave on Sunday I will not be permitted to return to the hospital. Covid numbers are through the roof. If you think it’s a bunch of bull, numbers are skewed, a political farce, or that we are being manipulated and are victims of fear mongering, perhaps some of it is true, but for the most part I beg to differ with you. It is real. It is affecting families. It is affecting our family. The hospitals ARE suffering, and being filled which in turn affects those who do not have covid being able to get the care they need. I could go on. I’ve pretty much remained silent on social media concerning my thoughts on this. I’ve unfollowed many people because I can’t handle the stress of their posts. We can agree to disagree. We’re still family and friends, I just can’t take it emotionally right now. I think I’m correct in my research and stance and you may think exactly the opposite in your stance and research. For every study, statistic, medical professional, or personal opinion, there is an equal number of studies, statistics, medical professionals and personal opinions to refute it. 🤷🏻‍♀️  Can we all just agree that it needs to stop? Can we all just agree that each human being is precious in the sight of God? We are all fighting our own dragons. Just be nice. Stop telling me I’m an idiot for wearing a mask. Just be nice.

Ok, I’ve stepped off my soapbox. Can we all agree that there is power in prayer, positive vibes, etc? We feel them and we are appreciative of your love and concern and all that you do or offer to do, even though we never take you up on it. It means so much. The texts, the love, the virtual hugs, etc. may you be blessed in your lives as you serve us in ours.

Brent & Lisa (although the soapbox part is strictly Lisa) 💞🙏🤞

Update: Michelle, who is working today, just got notice that IHC will be on lockdown again starting on Monday. This means I won’t be allowed to be here at the hospital. Can you change your prayers to PLEASE DONT NEED SURGERY?!?!  I don’t think I can handle that mentally. Thanks.

Well, unfortunately we’re back. This time in the ACVU (Acute Cardiovascular Unit.)

We’ve just been chilling at home doing everything we were supposed to be doing. Unfortunately, Brent started showing signs of heart failure. He’s been gaining a whole lot of fluid and today started being short of breath. If you have been following us, you know the basics: he was admitted on May 30 for sepsis originating from his central IV line which then spread to his artificial heart valve. The plan was to do IV antibiotics for six weeks at home and then re-evaluate the heart valve to determine if it needed to be replaced and if it did, could they do it via catheter or does it have to be open heart.

Well, it’s only been a week and a half. So that really sucks.

So, not much to report other than he’s back in the hospital. They will do an ekg, an echo, and probably a TEE tomorrow. The results of those will determine the next course of action. We are not going to assume anything.

So for those of you that ask for something specific to pray for, I guess just that we get answers? And that the hospital doesn’t go on lockdown which they say it is going to due to rising covid numbers. I can’t handle even the thought of that happening. Just social distance, wash your hands, and wear your @!*! masks people! It really is a simple thing to ask. And don’t even debate with me about the effectiveness of them. It won’t be pretty, I promise. You can talk to me about it when you are not allowed to be with your loved one when they are fighting for their life. Then and only then. Thanks.

Sorry, but not really. My PTSS is rearing it’s ugly head again. Yes, hospital stays are the norm for us. Yes, we have been through this so very many times. Yes, he has always bounced back. But no, it does not get any easier. In fact, it has gotten harder to deal with. Every time you wonder, is this it? Is there one more miracle in the cards for Brent? We pray there is. In the midst of so much hatred, confusion and turmoil in our world, we are here, and this is our own turmoil. We fight it every single day of our lives. Thanks for fighting with us, praying for us, and just being there with us. Again.

I apologize for not keeping you up to date. There really isn’t much to update.

We’re just in a hurry up and wait mode. Brent came home five days ago. For six weeks he is on the two heavy duty IV antibiotics. He had a PICC line put in before coming home so he can infuse his normal TPN every night. Over the six weeks he will have blood work and cultures done regularly. We also have appts with the infectious disease doc and heart surgeon.

After the six weeks the docs will re-evaluate and test and decide if his heart valve needs to be replaced. And then, if it does, they need to decide if he is a candidate for the replacement via a catheter or if he has to have full open heart surgery.

So, that’s the scoop. We are just chillin at home. He has lots of zoom work meetings and I’m bored to death. My babies come and visit and that always makes for a good day.

We are always on edge. We pray for the best but inevitably expect the worst. We’ve just been let down so many times. Anything that can go wrong usually does. . . And then some. 🤷🏻‍♀️  Don’t misunderstand, we truly are grateful for our blessings. We just seem take the hard road most of the time.

We’ll let you know if and when anything exciting happens. We really are glad to be home. We really are glad that we have a plan B. We really are glad to be alive in this crazy mixed up world.

Long post. Sorry, not sorry.

Well, most of you already know that Brent came home today. The final decision was to send him home on the two IV antibiotics for six weeks. He will have regular blood cultures and echos to check the heart valve.

We are happy to be home. Real food. Real bed. Less worry about viral germs.

That being said, our anxiety levels are through the roof. All of the what if’s. No button to push should something go wrong. This happens every time. So, as happy as we are to be home, it presents a whole different set of emotions and fears. I’m extremely happy to not have to drive the freeway mess through Lehi twice a day.

So, a little question and answer session for you because I get asked these things all the time.

* Does Brent eat real food?  Yes, he does. Brent only has about two feet of his small intestine left and about half of his colon. Most of the nutrients in what he eats does not get absorbed due to the lack of intestine. He eats because it keeps his liver happy. Most of Brents nutrition comes form TPN which is a pinpointed formula just for him that gets infused through a central line for 11 hours every night. We are truly thankful for modern medicine. There was a year where Brent could not eat or drink anything at all. That was followed by another year of eating only homemade soup that we puréed and put through two strainers. Now he can eat normal food with some restrictions.

* Is this all because of Crohn’s Disease?  Ultimately, yes. After a routine bowel resection surgery 14 years ago, Brents intestine ruptured, which lead to at least a dozen more abdominal surgeries to repair the damage. Thus, the lack of intestine.

* Can he have a transplant? Well, yes, they do intestinal transplants. They are extremely risky and the mortality rate is not good. We have met with a transplant team at UCLA and he is in their records. He is not on a transplant list. There a few things that qualifies one for an intestinal transplant. Lack of IV access for TPN. Liver failure (TPN is exptremely harsh on the liver.) almost all intestinal transplants are combined with a liver transplant. We would have to live in L.A. for a year. This is not a cure for Crohn’s Disease either. He would still have Crohn’s but with a new heathy gut. This transplant can only come from an organ donor who has died. Interestingly, a live donor can donate to a child needing a transplant.

* why does Brent keep defying all odds and making a comeback? Ok, this is a question we ask ourselves, not a question you have asked us. We honestly do not have an answer to that. We are in awe of the number of times he has been so very close to death, but truly miraculously came back to us. We recognize the hand of God in all things. We recognize that our family has had an over abundance of blessings and innumerable real life miracles over the past 14 years. Perhaps not the miracle or blessing that we hoped for and fervently prayed for but miracles nonetheless. Re recognize them each day and give thanks for another day. We also know that we are no more deserving of these blessings than anyone of you. Our hearts hurt when we think about our family and friends who have lost their loved ones to various circumstances. Why weren’t their loved ones spared pain and suffering and the sting of death? They are so loved and also had so much still to accomplish and offer in this life. They are no less worthy or deserving than we are. We truly wish we could answer this question. It is one of those questions that sometimes haunts us. We just have to trust in the Lord and know that these questions will be addressed and answered some day.

We love you and are so indebted to so many. You will never know how much we pray for you and pray that you, too, are being blessed for your service and love and prayers in our behalf. We are definitely not out of the woods, but we are home.

Well, I know you’re all wondering what the decision is. Funny story, so are we. Suffice it to say we had a frustrating day today. They did not do the TEE. They only did a regular echo. We never saw the ID doc or the surgeon so nothing is happening and we don’t know anything. I left at 9:00 with no answers.

Oooooookay, maybe disregard what I just wrote above. I mean, yes, we are frustrated, but I just got a text from Brent. Brent says we have another miracle to report. Dr Caine just came in after performing a surgery on someone else that took longer than expected. He says he was happy with the results of the echo and he is fine with Brent coming home on antibiotics for six weeks with constant blood cultures and echos. If after the six weeks he still feels like the valve needs to be replaced he would consider doing it via a catheter, not open heart. He says when Infectious Disease signs off on him he can come home. Now we don’t know what time frame that is. Hopefully we see them tomorrow.

The miracle is that he doesn’t have to have open heart surgery. The miracle is that sometimes prayers are answered the way we hope. The miracle is that we still have Brent.

So, once again we thank you for being a part of our lives. Thank you for prayers in our behalf. Thank you for loving us. Here’s hoping that all continues to go well with negative blood cultures and that he can come home and we can actually get some sleep. We love you.

Well, there’s really not a lot to report. Sorry for the lack of updates. Right now it’s still just a boring waiting game.

Brent is on two new IV antibiotics, daptomycin and ceftaroline. The goal right now is to achieve negative blood cultures, thus hopefully sterilizing the heart valve. Tomorrow he will undergo a TEE (not positive since the doc this morning said something different) to determine if the valve is functioning at full capacity again and if they can see any bacterial growth on it. IF the results are good, he will most likely not need open heart surgery to replace the valve. IF, however, there is still growth on the valve and it is not functioning properly, they will schedule open heart surgery for early next week. That is our understanding as of right now. But as in all things, plans can change.

Obviously we are fervently praying for him to not need the surgery. Unfortunately prayers are not always answered as we would like them to be. We put our trust in God and know that whatever happens we will be given the strength and ability to come out stronger and better than we were before. That’s been proven way too many times. Sometimes the miracle we are praying for or hoping for is not The miracle that we receive. But it is given and received nonetheless.

So, while we are just chillin in 804, Brent keeps busy by working and watching food shows on TV. His work zoom photo is not of him in his spiffy hospital gown, but of Waldorf from the Muppets. Go figure. I have books and a puzzle and lots of unhealthy snacks and Diet Pepsi to keep me happy.

Thanks for checking on us. We appreciate all of you. You’ll never know how much.

So, we haven’t posted anything for a few days. Sorry to those of you sitting on the edge of your seats. Kidding.

We were trying to process some news we got the other day. Unfortunately the bacteria has made its way to Brents artificial heart valve. That is the one thing we were praying wouldn’t happen. After a week of being on vancomycin he still was having positive blood cultures even after the central line was removed. The TEE they did showed growth on the valve. The Dr and ID Doc on call told us that Brent would have to have the valve replaced via another open heart surgery. That was pretty devastating news to hear. We were kind of in shock. All day today we’ve been waiting for Brent’s heart surgeon to come in and tell us what the plan is, fully expecting to be headed in for open heart surgery tomorrow. He came in about an hour ago after consulting with Brent’s ID Dr and cardiologist. We truly love Dr Caine and have full confidence in him. We were so blessed six years ago that he was on call at the hospital when Brent critically needed him. He proposed another option.

 There is an outside possibility that he may not have to have open heart surgery. Dr Dascomb (ID) and Dr Caine (surgeon) have decided to add two antibiotics to the treatment. If he starts having negative cultures (they are still running positive as of today) then A) he can get a PICC line put in so he can start his own TPN mix and be nutritionally boosted should he need surgery, and B) if the cultures stay negative, and the valve is sterilized by the antibiotics, he thinks he could do a valve replacement via catheter and not open heart.

That obviously is the preferred option, but it all depends on how the new antibiotics affect the bacteria. So, obviously we are hoping for this scenario, but we may still have to do the full open heart.

For now he gets to stay in the hospital and cool his jets for awhile waiting to see how affective  the IV antibiotics are. They will re-evaluate at the end of the week and do another TEE to assess the valve. If the antibiotics are ineffective they will have to do the full surgery at the beginning of next week.

Personal side note. (It’s my blog and I can do what I want, right?). I’ve truly struggled this past week, especially after fervently praying for the bacteria not to attack the heart valve, and then learning that it has. I’ve had a few emotional breakdowns. I think I’ve earned them. I asked our good friends who just happen to be our Stake President and Bishop to give me a blessing last night. After talking things out with them I was reminded that we have been richly blessed the past 14 years. We all know Brent has been living on borrowed time and we have seen miracle after miracle resulting in his life being spared too many times to count. I previously asked our Bishop if there are any miracles left in the stash. He responded, “Brent has shown there is no cap on miracles!” We’ve been cursed as well, but the blessings far outweigh the tragedies. Other people’s lives have been changed for the better. I also chatted with my dear friend today who sadly lost his sweet wife recently. He was able to answer my question and put things into perspective in a way I’ve never thought of before. Suffice it to say I’ve been humbled. I’ve been taught. I’ve been blessed. I’ve been loved. We have such a huge support system and I am so blessed to call you all my family and friends.

Brent commented a minute ago that when he was texting his coworkers he always says “we” when referring to what’s happening. I tend to do that too even though it’s his body that fails him. We are a team. We go through all of this together. Thank you all for being part of our team. Your prayers, support, love, service, thoughts and strength are what keeps us going. Thanks for sticking with us. It’s been quite the journey. We know that if this does ultimately lead to another open heart surgery you’ll still be there praying. Thank you. For now we just wait.

So sorry for not updating.

There’s not a lot to update. Brent is still in the hospital. Usually no news means good news. However, this time it just means I didn’t feel like writing anything. Brent’s blood cultures keep coming back positive which is baffling since he’s been on the IV antibiotics for almost a week now. He has not had any fevers which is good. Normally we could just go home with the antibiotics. Unfortunately this bug is prone to attach to things like his artificial heart valve and his central line. The line is gone, so that’s one less thing to worry about. Tomorrow Brent will have a TEE (Transesophageal echocardiography (TEE) is a test that produces pictures of your heart. TEE uses high-frequency sound waves (ultrasound) to make detailed pictures of your heart and the arteries that lead to and from it.). 

This is done by going down through the esophagus and looking at the heart from the inside. It gives them a clearer picture of the valve. This will rule out endocarditis on the heart valve. 

Hopefully they will feel better about sending him home if that proves negative. 

If you’re still hanging in there with us, pray for negative cultures tomorrow and a negative TEE result. Thanks ever so much. We love you. 

So, much to our dismay, today Brents central line was removed. We had decided that it was better to remove the line and reduce the risk of the bacteria attaching to the heart valve. The Dr agreed and so this afternoon they removed it. It was not easy. Poor Brent. 😢

Now it’s just another waiting game to see what his body does. The antibiotic he is on is the best one for this bacteria. Now we just need clean culture results. He can’t go home without either a PICC or another central line in his chest for his TPN. They won’t put another one in until the cultures are clean. Ugh.

So, if ya wanna pray for something specific, pray A) that the bacteria does not attack the heart valve and B) that the antibiotic works a bit harder to kill the bacteria still in his blood. Here’s hoping for a good day tomorrow.

We should be used to set backs and disappointment. It has happened too many times to count.

We should be used to being in that .001% of things that it never happens to. Murphy’s Law.

We should be used to that look on the Dr.’s face that says, “I have bad news.”

We should be used to miscommunication and nurse/aide mishaps.

We should be used to being forced to change our norm. Hell, we don’t even know what normal is anymore.

We should be used to bad hospital food. (We’ve had worse, much worse.)

We should be used to dropping everything and driving way too fast to the hospital because Brent is running a fever.

We should be used to Brent crashing so hard and so fast that you start to wonder if this is the one he won’t bounce back from.


As depressing as all that sounds, and yes, ok, we are a bit depressed right now, there are many more things we definitely ARE used to. You can substitute “thankful for” for “used to.”

We are used to feeling the love and prayers from all of you. It’s a real thing. Honestly.

We are used to good modern medicine that has kept Brent alive over the past 14 years.

We are used to a good medical team. (Sometimes we get bad dr.s and nurses, but this time they are top notch.)

We are used to those around us stopping whatever they are doing to see to our needs.

We are used to answered prayers that come in the form of a text, phone call, random acts of service, etc.

We are used to hundreds of Priesthood blessings at the hands of our dear sons and friends.

We are used to Brent bouncing back against all odds. Seriously though.

We are used to coming home feeling relieved and oh so blessed.

We are used to feeling humbled that when he crashes hard and fast, he normally comes back just as fast.

We are used to just holding each other thankful for another chance at life.


With all that stuff said (sorry, sometimes I get a bit overwhelmed with both sadness and gratitude.)🤷‍♀️We were told earlier this afternoon that he was going home. Arrangements were being made for the at home antibiotics. Orders were supposedly being written up for discharge. Enter the Infectious Disease doc. ☹️  The blood cultures from the peripheral tests showed up positive today. That means the bacteria is in his bloodstream and not just in the central line. Because this particular bug likes to cling to foreign objects in the body, like the line itself, there is also danger of it attacking the artificial heart valve. With that being the case, we have to repeat the cultures and wait 48 hours to see if they are negative. If not, we have to go with the other plan and have the central line removed and a PICC put in. (I’m not sure why I say “we” when Brent is the one being poked and laying in the hospital bed.) As much as this all sucks, we are thankful that the doc is being mindful of the danger/risk and is being cautious. Our favorite saying...it is what it is. Nothing we can do about it.

So, if you’re still with us, and still praying, could you pray that the cultures are negative? That would be awesome. Throw in a good word for our morale too. This gets kinda old kinda fast.

💞

Quick update. Brents doing well today. We’ve been waiting to talk to the infectious disease doc before posting so we know what’s going on.

The bacteria in his central IV lines is one that he’s had before. In fact, it is the same one that caused his endocarditis that tried to kill him and subsequently caused his open heart surgery for a valve replacement. Yippee. Not.

We were given two options. A) Remove the line, get a PICC line put in for his TPN (IV nutrition he does every night), be on IV antibiotics for five days, re-test via blood cultures, put the Central line back in when safe to do so. B) do NOT remove the central line, run IV antibiotics continuously through the lines for 14 days (at home, not in the hospital) still being able to use one of the lines for tpn every night, re-test via blood cultures and if negative, he’s good to go.

We chose plan B.

Both plans create different complications to consider. If the lines are removed, he has to have a PICC line put in. He has already lost most of his access points in his arms for PICC’s. And every time you remove his central Hickman line it reduces his access also. One of the major qualifications for an intestinal transplant is major loss of IV access. While a transplant sounds like a great ‘cure’ or option, it is not. Intestinal transplants are very risky and there are so many things to take into account. It is not a cure. He would still have Crohn’s Disease but with a fresh new intestine to wreak havoc in. Ultimately we would have to live in Los Angeles for a year to be near UCLA. That is the hospital that we chose several years ago to have a transplant when and if the time ever comes. He is not on a formal transplant waiting list, but he is in their system and we have been down there to meet with their transplant team.

So, we are going with plan B. It’s not ideal and will be a pain. This particular antibiotic affects him terribly and I will have to watch him carefully. This bacteria tends to love foreign objects such as his heart valve and central line. We will have to make sure that it is totally gone before discontinuing the antibiotic. They will do an echo today to make sure there is no growth on the heart valve. It will be repeated after the 14 days.

So, that’s the scoop. Hopefully the echo will be clean and they can get things ordered and set up for home and we can go home tomorrow. 🤞🙏.

He’s currently dialed in to a zoom staff meeting so I think you can safely say he’s bored and doing much better. 🤣.

Thanks for checking in on us. Love you.

Well, I didn’t really want to post on the blog, but I’ve had too many inquiries about how Brent’s  doing. Not that I don’t appreciate your love and concern, I just don’t want to text everyone back. ☺️


We want you to know that we are so thankful for your love and concern and we do feel the power that is in prayer. Seeing everyone’s concern really does strengthen us. I don’t post on insta or Facebook to get sympathy, I post because so many people love Brent and always want to know when he is struggling and in the hospital. We are beyond grateful for our families and friends and your willingness to always continue to pray for us. That is what keeps us going through crazy times.

I’ve got a lot of really raw emotions right now and I will try to spare you those. They’re not fun at all. I’ll save that for another time maybe.

Brent started running a fever yesterday at about noon. Fevers are normal for most people, not normal for Brent. It is sometimes the only indicator that something is brewing. He has gone septic so many times in various degrees of danger. We immediately head to the ER. We were a little hesitant this time because he had just had his iron infusion at Huntsman on Friday. Sometimes it can cause weird side effects, but not usually a fever. The level of our perceived danger dictates which hospital we are going to. This time we felt comfortable driving up to Murray. If you’re new to the blog, we absolutely avoid going to Utah Valley if we can. We prefer IMED because his whole medical team is here.

Unfortunately, in this wonderful world of COVID-19, fever=COVID. No exceptions. I was not permitted to be with Brent in the ER. (This is where the raw emotions fit in in the story but I will skip ahead a bit to spare you.) Brent was tested for COVID, and the rapid test was negative. Once they got him stable enough to move out of the ER he was moved to the 8th floor. Initially I was told that he would be going to the COVID floor and once again I would not be permitted to be with him. Luckily that did not happen. And yes, I’m leaving out a huge part of the story.

So far, the blood pressure has stabilized and his temp is normal. He was on two IV antibiotics and now is just on one. The blood cultures from his central IV line are showing growth, which is what we suspected. The cultures from his peripheral tests are not growing anything so far, which is good. That means so far there is no indication that the bacteria is in his bloodstream. We won’t know what specific bacteria he has until probably tomorrow. If it’s a certain kind they will pull the line again. Some types can be treated without pulling the line.

My guess right now is that he will go home in a day or two with IV antibiotics that we do at home. We’re used to that. Fortunately and unfortunately. Fortunately because we can do it at home and not have to sit at the hospital, and unfortunately because it’s unfortunate that we are so used to it and comfortable doing them ourselves at home.

I think we caught this one pretty quick which is very advantageous. On a scale of 1-10, with 1 being no big deal, to 10 being last July’s ‘call-the-family-in-to-say-their-goodbyes’ episode, I would give this one a 5-6.

Truly, thank you for your love and concern. So many offers of help. We don’t usually need anything except your constant love and prayers which we feel we always have. When the kids were all at home we used to say that we went into ‘hospital mode’ when things would happen. Everyone knew what to do to make our lives function as best we could. I feel you all share in that ‘hospital mode’ with us. We are automatically added back into your thoughts and prayers. Thank you once again for letting us invade your lives.

Yes, Brent did come home yesterday. We decided with the storm forecast and the fact that nothing was being done that we couldn’t do at home that we would go for it. So far so good. We have IV antibiotics for ten days, with follow ups with the right people. It’s always scary to leave the hospital where there are trained personnel if anything goes wrong. I’m not trained, calm, and probably wouldn’t be considered to have a great bedside manner. Although I AM an honorary surgeon and nurse. Dr Price bestowed that upon me several years ago when I did a procedure at home with him on the phone. Ha.

We came home to a wonderful meal from our good friends, Dan and Cindy. They shared their Super Bowl feast with us. Let’s just say I need to up my game from beanie wienees and wings to smoked salmon and the best steak ever! Thanks!

Snowmageden 2020 hasn’t hit Provo, but up north is getting slammed. Thankful we did come home yesterday.

In all seriousness, we are still waiting on tests to see if they can ever identify the bacteria or fungus causing the pneumonia. He’s still sick, tired from no sleep, and frustrated with yet another set back. We continue to be ever grateful for modern medicine, doctors and nurses that listen and act, family and friends, and the many prayers offered in our behalf. So much to be thankful for.

Well, it looks like we’re headed home today. They said if he didn’t have any fevers through the night last night that he could go home. He did have a fever so we figured he wouldn’t be going home. Ultimately it was left up to us. Say what? Ok. Well we requested a chest X-ray before we leave. It showed no change, but at least it wasn’t worse. We decided with a storm coming, and the fact that we can administer IV antibiotics at home, that we would go home. Please pray that all goes well and that we can have peace. We get a little (a lot) freaked out since the July episode. We still have no answers as to what Brent is fighting. I mean, it’s pneumonia, but they can’t figure out what kind of bug is causing it. The IV antibiotic that he will go home on is a pretty broad spectrum heavy duty one.

Of course he needs rest. But he is also bored. Shoot me a text if you want to visit. Please be smart though and stay away if you have been or are sick. Even if it’s just a cold or a tickle in your throat. When you have no immune system every germ is exaggerated by a million. A sniffle to you could be ICU to Brent. Thanks.

We love you and feel of your love and prayers. Seriously.

Still nothing to report. The bronchoscope this morning went well. Brent on drugs is always fun. They flushed his lungs to get samples to hopefully diagnose which bacteria is causing the pneumonia. Hopefully it grows fast so we can get the right drugs on board and get out of here. It could be bacterial, it could be fungal. No clue. We do know we will be here at least two more days. Ugh. Brents bored and restless. But I wouldn’t recommend coming up. There is so much flu and pneumonia in here. I think all the beds on this floor have filled up since we got here. It’s crazy. So we’ll just be chilling out here for a few more days. Hopefully the fevers can stop and Brent can get some rest.

We are very appreciative of all of the love and offers of help. We really don’t need anything except prayers right now. If you could pray for our dear friend Julie, that would be great. She’s fighting metastatic breast cancer and is scheduled to have surgery to remove a brain tumor next week. She’s a true angel here on earth. The best of the best. 💞

Not much to update this morning yet. Brent ran low grade fevers through the night, so that is an improvement. He’s currently down having his bronchio scope. Sounds horrid. I’m not sure when the results will be back. It involves cultures so I’m sure  it will not be today. Thanks for checking in.

Okay, I guess I’ll cave and reactivate the Brent blog.

Yesterday we brought Brent up to LDS Hospital and he was admitted. Long story short, two and a half weeks ago he was admitted through the ER at IMED with fevers. When Brent starts having fevers we immediately get to the ER. We all know how fast he goes from normal to ICU with sepsis. The first thought is always that he has a central IV line infection. The lines were cultured and nothing grew. A chest X-ray hinted at pneumonia but he didn’t really have any symptoms. After four days of IV antibiotics they sent him home assuming it was pneumonia but nothing definite. Unfortunately the care we got while there was less than stellar and the docs didn’t listen to Brent and sent him home with oral antibiotics which do not work for him at all.

Fast forward two weeks later, developed a cough, higher fevers, a visit to the doc, another chest X-ray, blood work and two IV antibiotics ordered. That was Monday. Tuesday we got our infectious disease doc on board because he wasn’t responding to the antibiotics and still running fevers. We were too off of our game to call her ourselves while we were in the hospital the first time. Our bad. Although we did ask them to call her several times.....their bad.

The infectious disease doc called yesterday very concerned about what she saw in the x-rays. She consulted with her pulmonologist and they both concurred that Brent needed to be admitted. Even though we got the shaft last time at IMED that is our preferred hospital because Brents whole team is there. Unfortunately everybody else in the state is sick and IMED was full. So, here we are at LDS. It really hasn’t changed since we were here 14 years ago for several months. haha.

So far we’ve been impressed with the Hospitalist and the nurses we’ve had. They’ve been running all sorts of tests. The CT scan this morning did show extensive pneumonia in both lungs, but no clots or abscesses, which is good. Also no fluid around the lungs which is also good. The pulmonologist has scheduled a bronchial scope tomorrow to get a sample of the infection. Brent so far has not been responding to the three heavy duty IV antibiotics, so they need positive identification as to what bug they are dealing with. Please pray it is NOT a micro bacterium. Last time he had one of those he was on IV antibiotics for several weeks/months.

Of course they have checked for influenza and MRSA. Still waiting on the MRSA. They have recultured the IV lines and so far nothing is growing. Thankful for small and large blessings. We definitely do not want to have to pull the lines again.

So the rest of today is just a waiting game. The test tomorrow  will hopefully produce positive results so that we can treat this and get back home.

Hopefully that answers everybody’s questions. When I get overwhelmed with the texts I decide to write on the blog. Don’t get me wrong, I love the support and strength we receive from all of you, it’s just that I’m getting old and forget what I told whom. (Tina, is that the correct usage of whom?) 😂.

As always, we love you and appreciate your concern and prayers. Seriously we do.