Merry Christmas!

MERRY CHRISTMAS TO YOU, OUR FAMILY AND FRIENDS 

We’ve had a crazy, fun, busy year.

Joseph and Erin built a new house in Herriman, Utah (about 45 minutes away) and finally got to move in. Yay! Their big news was baby Lilly (Lillian RoseMarie Moore) joining their family in June. She’s adorable and has the biggest most beautiful eyes.  Violet (5) started kindergarten this year and is thriving and loving it. She got to go to Disneyland with Auntie Mimi (Michelle) for her 5th birthday. Marshall (3) runs the house and both misses Violet and loves his time ruling the roost. Joseph is still recovering from his stroke but is doing well.


Michelle still spends her time in the pediatric Neuro Trauma Unit making kid’s and parents lives better. She’s the favorite nurse, favorite Aunt, and favorite world traveler. Many trips to Disneyland and a trip to Fiji kept her sane. Rumor has it she’s headed to Tahiti next spring.

Tina and Thomas have had a crazy year. Tina teaching, Thomas going to BYU, and Elanor turning one. Their lives are being turned upside down as Thomas is being deployed. They will be moving in with us the day after Christmas.  And in other news . . . they will welcome another cute baby in May!  Ela keeps us all laughing.

David and Molly are enjoying their time post-graduation and working hard. David graduated from Utah State University in Biochemistry in May and we are so proud of him.

Same old same old for Brent and I. We did get to take the trailer out a few times this year and spent many days in the Uintas camping and fishing. Brent was also able to go on another fly-fishing expedition on the Green River with his brother Dennis. They have so much fun. Jan and I stayed back at the cabins and relaxed and talked about our husbands. Ha. It’s been a year of ups and downs health wise but for the most part we are doing ok. Brent still works at BYU but is looking forward to retirement in a couple years.

We truly hope you have had a good year filled with love, happiness, new adventures, and true joy. We pray you are filled with His light this Christmas time and that you are able to share that light with others. We cherish our time with our family and friends and are blessed to have you in our lives.

Merry Christmas and hopes for a beautiful and healing 2023.

Brent and Lisa

Answers, more questions, decisions to make

 Well, our trip to the University of Nebraska’s Intestinal Rehab facility was definitely interesting. I won’t really share what all we learned because we still need to figure out what to do with the information and test results and options presented. Nothing will be happening anytime soon. Still waiting on some test results but the consult with the team of docs was good. We have a lot to research and ponder. 

We don’t regret taking the chance and we may or may not be returning some day. 

We do appreciate your love and support and prayers for success. It brings us peace and hope. 

We did walk across a pedestrian bridge to the middle of the Missouri River where Iowa and Nebraska meet so I could put one foot in my home state. Ha. 

Faith and Hope and Answers…

 

Brent and I have the opportunity to find answers. He was accepted as a patient at the University of Nebraska Intestinal Rehabilitation Center. They are ranked the top in the country for helping people like Brent. Today and tomorrow he will undergo tests of various types and then we will meet with their team of Intestinal docs to see if there is anything more we could be doing to improve Brent’s quality of life or if this is as good as it gets. If we come home knowing we are doing everything we can then so be it. We have lived this life for over 16 years now. But, if there is a chance that there is something we can do, we also need to know that and decide how to move forward with their recommendations. This trip could prove to be nothing, and we continue to live our lives as we know it, or it could prove to be life changing and we move forward with hope and faith for a better, longer life for Brent. Prayers for answers, no matter what they are, are appreciated. Thanks for your constant love and support. 

 We choose to see small and large events in our lives as tender mercies and miracles. Our family has had their share of them that’s for sure. Each of us has had them occur throughout the years. Today I choose to acknowledge one of them. Brent’s big project at work went live this morning (a miracle in and of itself) and he woke up at his normal weight, having dropped all of his 30 lbs of fluid since coming home from the hospital. This was not the case even as of yesterday. He seriously just left for his office on campus to watch and aid in the changing over of the systems. So crazy. So wonderful. So blessed. We acknowledge His hand, your faith, your prayers, your positive thoughts and vibes, and your constant support. Thank you. Once again. 

We still have no definitive answers or diagnosis for this 10 day hospital stay. Just praying it’s over. 

He’s home

 Brent did make it home last night at about 5:30. We are thankful he is home. Now we figure out our new norm and schedule with all the meds. We pray all goes well and he can stay home. 

Thank you for your faith, love, and prayers. 

 

Supposedly we are headed home soon. Hospitals shut down on the weekend because nobody gets sick on weekends. Ha. It has literally taken the entire day to figure out discharge orders. . . Still waiting . . .

 Today the Dr's told Brent that if all goes well tonight, and he keeps getting rid of some of the 30 lbs. of built up fluid, that he is on track to be released tomorrow. Brent say he feels like Wall-E, fat and just lazily sitting in his recliner. There are still no definitive answers as to what started all of this in the first place. Lots of theories, but cultures are still pending. If he comes home tomorrow it will be with IV antifungals for the suspected Cocci/Valley Fever in his lungs. 

One theory of the initial fever and gut problems is that the Crohn's flare he was having while we also had Covid in May, and then treated the flare with high dose steroids, triggered the coccidioidomycosis or cocci that was hibernating in his lungs. The cultures take quite awhile so that hasn't been confirmed yet. None of the other theories have panned out either. We just shake our heads, the Dr's just shake their heads, and we write it off as, it's because he is who he is, and nothing is normal. 

Many of you say that you appreciate a specific thing to pray for. I guess that would be that he has a good night, continues to lose the fluid buildup, and can safely come home without rebounding back in. We pray that eventually tests will confirm a real, treatable diagnosis.

As always, we love and appreciate you. We know that life deals all of us trials and extremely hard times. Our trials are your not trials, and visa versa, but they are all trials nonetheless. We believe that we are all here to help each other be the best we can be, and lift each other up and out of whatever hell we may find ourselves in. Our particular trials usually involve health. Yours may be something totally different. Thanks for lifting us up, and we pray that we can help you when needed.

We went to the balloons this morning. Of course they didn't get to go up, but we had fun anyways. 

Marshall showing pure joy and excitement.

Gramma, Auntie Mimi< Violet & Marshall.

Nine more days until Thomas comes home!  But who's counting?

Joseph, Violet & Marshall.

Elanor was more interested in eating the Chick Fil A ears. 

 Brent is doing ok. He has about 30 lbs of fluid built up as a result of the ER and ICU pumping 10 liters of fluid into him along with steroids. Yippee. Trying to alleviate that, but it is going slow. 

I didn't update yesterday, because pretty much nothing happened and I was so frustrated and ticked that I figured nobody needed to read that. Sometimes I share my raw emotions, but yesterday was not the day. 

So, basically, nobody still knows what all of this is caused by. So many cultures and blood tests, x-rays, CT scans, etc, and nothing definitive to be the root cause of everything since coming in last Thursday with fever and vomiting. Still not 100% sure of the pneumonia diagnosis. Could be the Coxi (Valley Fever), could be bacterial pneumonia. The bronchoscope didn't show much. I guess Coxi likes to hide in the walls of the lungs. The extra fluid can affect his heart, so they want to monitor that, and he can't be released until the fluid goes down. While we appreciate everyone being cautious, we would also appreciate everyone getting on the same page, and not dragging their feet. It's been so very frustrating. There are so many cooks in the kitchen and dinner is not getting made. I'd settle for an appetizer just to quench my hunger for answers. We have GI, ID, Internal Medicine, Surgical, etc., and decisions are still not being made as to what to do. Supposedly this morning the hospitalist was going to coordinate with all the specialists to make a plan of action. With the holiday weekend, I don't foresee anything happening. Seems as though you can't be sick on the weekend anymore because nobody works. Craziness. 

Sorry for being a downer. It's been a long week. We appreciate you checking up on us. We are ok and don't really need anything. Hopefully everyone has a safe, fun, family filled holiday weekend. Our 33rd annual 4th of July party with our family and friends will go on regardless. We just hope that Brent can be home to enjoy it. 

 I do realize that I have not given an update. Several people have asked. Ha. On my way up to Murray right now and will update when I get there. 

 Brent had a busy day with lots of Dr's coming in. He was able to go down for a bronchoscope, which is where they put him out, numb the throat, go into the lungs with a camera, flush the lungs, biopsy whatever they get out, and send him back. He says his lungs actually feel better after being washed. 

GI doc came in. He doesn't foresee any surgical needs. Yay. 

So, still just a lot of hurry up and wait going on here. We will see what the bronchoscope shows and go from there. 

Usually, when Brent is on high dose IV antibiotics his Crohn's is super quiet, so here's hoping it stays quiet. 

The lung problems he's had over the past few years have been worrisome. We are looking into getting a small portable oxygen concentrator for when we go to the mountains at 10.000 ft elevation and he gets low sats. The mountains are our escape from reality and we are not willing to give that part of our mental health up. 

While we've been here this time, we are witnessing first hand how stretched and critically in trouble our health care system really is. The healthcare providers are exhausted, and stretched so thin due to Dr's and nurses leaving the profession due to burnout. The facilities are suffering due to lack of maintenance due to lack of workers. Supplies are always in shortage. We've been dealing with so many drug and supply shortages for the past few years. It's quite scary when you can't get the drugs you need, or even the supplies to administer them. It's absolutely nuts and so frustrating. Brent relies on an IV for 11 hours every night for his TPN (nutrition.) There was a time when the tubing for the IV pumps was not available. He was having to reuse tubing, and only doing his TPN every other night due to the shortage of tubing. It is insane. I pray that this crazy world we are living in right now can recover. Peoples lives are on the line, and many have lost the battle. 

STEPS OFF SOAPBOX . . . 

The nurses we have had this time have been primo for the most part. We are always so grateful for the Dr's and nurses, and the care they do give. Now, if they could just figure out what is going on so we can go home, that would be awesome. We have mountains to climb. . .

OH!!!!! Our sweet grandbaby Lilly came home from the NICU today. Her big sister and brother adore her, but keep waking her up. Ha. I had to fight Joseph to hold her for a minute. Ha. They are all pretty enamored with her. She is so snuggly and cute. 

Joseph & Lilly. I think he's a bit smitten.

Erin, Violet, Marshall and Lillian

Baby Lilly

this is Brent's "I'm bored and want to go home" face. 

 We don't have a whole lot to report today. Pretty much just sitting around waiting for Brent to get a CT scan of his lungs to hopefully determine what is going on. Blood pressure is still fine, O2 has been a bit low due to the diminished lung capacity so he's on a bit of oxygen. 

Last year Brent was hospitalized with supposed pneumonia, and after being home for awhile he got a call from the Utah Health Dept saying he had tested positive for Coccidioidos commonly called Valley Fever. 

This mimics pneumonia but is a fungal infection of the lungs, not bacterial or viral. Sometimes it can live in your lungs for years, and sometimes for the rest of your life. 

The infectious disease Dr suspects this might be this that is rearing its ugly head again. 

We honestly won't know anything until they do the CT scan ... hospital time ... 

If it is Valley Fever, he would be on anti-fungal medications indefinitely. 

Still not sure what is going on with the intestines, but usually when he is on high dose antibiotics, the Crohn's is quieted down. 

So, basically we know nothing. The Dr's know nothing. How's that for an update? 

There has been an unofficial race to see who gets out of the hospital first, and baby Lilly is on track to be released from the NICU tomorrow! It's OK if she wins! We are excited to be able to snuggle her at home. 

As always, we love and appreciate you and love having you on our team. Your thoughts and prayers are felt. I was able to feel peace today as I was able to serve my Monday morning temple shift and know that he was OK. Baby Lilly is thriving. Brent is still here. Always look for the miracles, small and large. 

emoji's and pneumonia

 I sent a text to a friend that ended with three emoji's. The teary face, the swearing face and the praying hands (that's really a high 5, but ya know.) I asked if you can put the praying emoji after the swearing emoji. They said "etiquette requires the prayer emoji should come first." I commented that I'm not very cultured. 

Definitely not coming home today. Brent has now tested positive for staph, and has pneumonia. WTH? We always have to keep things exciting I guess. So far they aren't doing anything they haven't already been doing. He's on three different IV antibiotics. He also let them know that we had asked to have his team notified, and they haven't been. We need to be better at being more proactive in his care. It's not like this hasn't happened before. Guess we're a bit off our game.  It's still frustrating nonetheless. One of Brent's biggest frustrations is when the Dr.s and nurses don't listen to him. He knows his body better than they know their textbooks. He's far from a textbook case. With that being said, we truly are still grateful for modern medicine and the people that have worked so hard to keep him here on earth. 

      

 Well, false alarm. Brent won’t be coming home today. Hopefully it’s nothing serious but he feels like he has a plural effusion. (Fluid between the lungs and chest.) he’s had it before so he knows what it feels like. As Brent said “ It is the same thing we see every time. The team that is treating us has tunnel vision on the one reason we showed up and when every thing else gets messed up they don’t seem to notice.” Chest X-ray has been taken so we’ll see what happens. We ask them to contact HIS team but they didn’t. You would think that we would know by now that we have to take his care into our own hands. Prayers that it is nothing serious. Thanks. 

 Not a whole lot going on today. Just a lot of waiting. They are allowing him to start eating a full liquid diet and drinking today to see what happens. Hoping all goes well. The case manager came in and said he might be going home tomorrow if all goes well today. That would be awesome. 

 Brent was moved out of ICU this afternoon and into a normal room on the trauma floor. Woo hoo! He’s doing well and is just chillin until they figure out what to do with him. We are guessing that he will be sent home with IV antibiotics for an indefinite period of time. Here’s hoping! 

 Brent’s doing well and in good spirits. The Dr’s just came in and they still aren’t sure what’s going on with the low blood pressure and the CT scan showing air in the intestinal wall. It could be something as simple as a viral infection. His fever contradicts the white count totally confusing everyone. 🤷🏻‍♀️ The overall consensus is that HE DOES NOT NEED SURGERY. Nobody wants to go back in his gut due to all of the previous work done, scar tissue, and risk of complications. Looks like we will be moving to a regular room today. We love the one on one attention (for the most part) that the ICU affords, but dang, the ICU is definitely not visitor friendly or comfortable. 

While texting his bosses/coworkers this morning, they both offered to have Brent work on some things at work to get his blood pressure up. Ha. 

We truly do appreciate all of the thoughts and prayers sent our way and heavenward whenever we have a scare. Some people criticize the whole “sending our thoughts and prayers” adage, but honestly, that’s all we truly need most of the time. (Well, ok, I have a friend picking up some dark chocolate toasted coconut cashews at Costco today, so sometimes ‘we’ need material things.) And trust me, they are felt ever so deeply. We are so grateful for our support team (you) who has stuck by us through tragedy after tragedy over the past 16 years. It’s definitely been a roller coaster we never wanted to be on, and have tried to jump off several times. Thanks for catching us. 

We should never make plans…

 Brent started feeling sick last night but nothing too out of the norm for him, especially after having his Stelara shot. At 4:00am this morning things took a turn for the worse. Then came the fever……

Fever for Brent means automatic trip to the ER. Feeling like we had the time, I drove to IMED where his medical team is. 

His blood pressure was pretty low. Started fluids and antibiotics and did an X-ray and CT scan. Because his insides are mostly missing and what isn’t missing is covered in scar tissue, the ER doc and radiologist read the CT and said he had a perforated bowel and needed to head to surgery. Whoa! Slow down there cowboy, this isn’t our first rodeo! Nobody’s cutting into anyone until we talk to his surgeon. 

If you’ve been with us for awhile, you probably know that his surgeon is a world renowned surgeon who trains other surgeons in Mongolia….like a lot….like every time we need him it seems he’s in Mongolia….like today….So, no consult with him. :(  

Luckily, the surgical resident seemed really level headed and he read the CT and said it does not look like a perforation, but there is air in the bowel wall. That is some sign of infection, but not surgery material right now. It could be a severe Crohn’s flare. Not quite sure. 

So, Brent is now in the shock trauma ICU having his blood pressure monitored, getting tons of fluids, antibiotics and steroids. No answers as of yet. 

We should know better than to make plans months in advance. Supposed to be going down by Capital Reef for a few days with dear friends. Enjoy the quaking aspens and pines for us. 

Our new grandbaby, Lillian (Lilly) is in the Nicu in Provo. She’s doing well. Hoping for a release soon. She’s so dang snuggly and cute. 

 COVID SUCKS and silver linings . . . 

Life update, because people keep asking:

It’s been an interesting week for us. Pretty much, our week sucked. I tested positive for Covid on Monday. I retired to the basement in an effort to keep Brent healthy. On Wednesday, he tested again before leaving to attend David’s graduation from USU, and much to our dismay and many tears shed he was positive. Our grandbaby Elanor also tested positive on Wednesday, with her dad, Thomas testing positive on Friday. They both have been and still are quite sick.

Of course our biggest worry was Brent. We immediately called his infectious disease doctor and she ordered a monoclonal antibody infusion, which he qualified for only because “he is who he is” she said.

We honestly have no idea where I picked it up and will never know. We are so very careful. If you know us, you know how careful we are, even before Covid. Please stay home if you’re sick, or wear a mask. It honestly won’t kill you, but you may kill someone else.

As per our luck, it was the worst week to be sick and quarantined. We didn’t celebrate Brent’s birthday, most of us had to miss David’s graduation from USU, and Mother’s Day.

So, as I was hiding in the basement I found myself angry as he!!, frustrated, worried beyond worried for all of those I exposed without knowing I was contagious, and just plain sad that I would miss graduation. We are so proud of David and the trials he has overcome throughout his time at USU.

For my own mental health I decided I needed to focus on the positives.

*Hey, it took over two years for this damn virus to beat us!
*We were able to watch graduation online, thankful for modern technology.
*We’ve been blessed with the best family and friends. (Prayers, Puzzles, facetimes, jamba, Joe Vera, Zupas, Molly’s, errands, etc.)
*Brent’s ID Dr. said that if he was going to get it, this was actually the most opportune time for him. He was able to get a Monoclonal Antibody infusion, which, if he had gotten Covid during a surge, he would not have been able to get them. Also, if he needed to be hospitalized, there are actually beds available right now. There are new medications available now that weren’t available in the earlier stages of the pandemic. Also, the timing of his 3 shots and booster was perfect.
*Brent responded well to the antibody infusion and actually did better than I did with symptoms.
*I was able to start an antiviral medication within 24 hrs. Covid kicked my butt but as hard as it hit, it left pretty quickly also and I’m just tired now.
*Michelle was brave enough to drive the truck and Uhaul trailer up to Logan and back and help David and Molly move. Thankful that Michelle and Brenda were able to go represent all of us who couldn’t go.
*Thankful that I could come out of hiding after Brent tested positive. (Ok, might be stretching it a bit trying to find silver linings.)

In all reality, we have to find the silver linings. We have to expect and look for the miracles. We have to know that even if we aren’t spared the trials and hardships this life has dealt us, there’s still goodness to find in the journey. I have to constantly remind myself of this.

Brent still turned another year older, and that’s a win.

David still graduated with a degree in Biochemistry, and will start at the University of Utah this fall. Hopefully he knows how much we love him and are proud of him.

Mother’s Day came and went.

Brent and I are feeling better.

Elanor and Thomas will hopefully start their upward journey to feeing better.

Hopefully nobody else tests positive.

Life goes on.

Ever grateful.