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.