Doing OK

 A lot of you are still checking in and we appreciate your love and concern. No real updates right now. Brent will remain on IV cefazolin for several weeks in the hopes of it clearing up the endocarditis on his aortic heart valve. This is in hopes of avoiding another valve replacement. He’s feeling ok and just being a little cautious. There’s more than enough anxiety between the two of us for sure. 

Funny (not funny) story…. The last time this happened, a piece of the infected vegetation on his valve broke off, causing a heart attack and sending him in for his second valve replacement. This happened while a new adjustable bed was being delivered and set up in our bedroom. Well…we have decided to upgrade the adjustable bed to a split king because Brent has to sleep sitting up. It will be delivered and set up in the next week or two….see the ‘not-so-funny’ coincidence? Brent will NOT be home when the bed is delivered for obvious reasons. So to say the anxiety is high is not a joke at all. So excited for the new bed and the remodeling we’re doing but it comes with a high price. Oh the crazy thing we have to worry about……

Home

 Brent is home. 💞

Quick update

 I always say quick but it’s usually not quick because I ramble. . .

Brent had his Central line replaced today. We are waiting for his 2:00 antibiotic infusion and then should be cleared to go home. 

We all know hospital time is not normal time. Here’s hoping we get out of here before rush hour(s). 

He will remain on IV antibiotics for several weeks in hopes of saving the heart valve. 

We love you and thank you for your continued strength and compassion over the last 18 years. It’s been 18 years we didn’t think we would have. We do acknowledge our many miracles and tender mercies. 💞

Home? Maybe?

 I apologize for not updating. I know Brent is loved by many and your concern and prayers truly are appreciated. 

Todays news is hopeful for going home tomorrow. It’s always a matter of getting everyone on the same page. The resident this morning said the cultures have been negative and they could start the process of reinserting his central IV line and discharge. Sometimes residents need to be reeled in a bit regardless of how much we want to be home. The attending Dr and Infectious Disease decided it should wait until tomorrow for continued monitoring of the cultures. 

Yesterday ID switched up his antibiotics. The clean cultures do not mean that his heart valve is clean. He will remain on IV antibiotics for several weeks in the hopes of clearing the endocarditis on the valve, thus avoiding another valve replacement. 

Going home is always good. Going home is always frightening. Going home means immediate help is not at the push of a call button. Going home brings a lot of ptsd of the last time they sent him home with active endocarditis and IV antibiotics. If you want the details see the blog post from June 20, 2020 when a piece of the infection broke off causing a heart attack. Not one of our favorite memories. 

Sooooooo, as always, our prayers are for the antibiotics to work, for the heart to heal and for no surgery. We love you. We say prayers of gratitude for you and your kindnesses. We know all things are in the hands of God. We do our best to do our part. 

 Everyone always says “you guys are so strong!” Or “I don’t know how you do it.” Or “you’re always still smiling.” Or “I could never do what you do.” 

 To respond to those sayings: No, no we’re not, we do it by the grace of God and because of your strength, no, we don’t always smile and if we do it’s probably fake, we cry a lot, and yes, you could if you had to, be grateful you don’t. 

Today brings more disappointment. The cultures are still positive in his blood stream which means the clock starts over again for another 72 hours. 

Everyone seems a bit baffled as to what the best course of action is. They are trying everything they can to not have to replace the heart valve for the third time. Brent’s case is just so complicated that some drugs they would use on normal patients are not an option for him. There is just so much to take into consideration when balancing all of his medical complications. Apparently this strain of staph epi is different from previous strains he’s had. 

Brent is tired, frustrated, disappointed, and we are just baffled at how he keeps getting line infections while being oh so very careful. My phrase as of late is “it’s just dumb.” 

The physical stuff is out of our hands. Maybe if you are looking for a specific thing to pray for, pray for our mental and spiritual well being. It’s lacking. Happy Sabbath. Thank you for checking in and being our strength and support when we need it most. 

And the heavens opened and God said, “I hate you alfalfa!”

 Well, it’s not quiet the worst case scenario. 

The TEE today showed suspected endocarditis on Brent’s artificial heart valve. Definitely not what we were hoping for. Staph epi loves foreign objects. It is a bacteria commonly found on your skin. Even as careful as Brent is with his central line, it finds a way to wreak havoc. His line was removed today. 

The tender mercy of the day was that his cardiologist was the one doing the procedures today in heart and lung. We love him. He didn’t want to break the bad news. 

He had already consulted with Dr Caine, Brent’s cardio thoracic surgeon and they are recommending at this time to hit it with mega antibiotics in the hopes of avoiding another replacement. The success and efficacy of replacement lessons each time the valve is replaced. The last time he was sent home on antibiotics to hopefully nix the staph epi on his first artificial heart valve he ended up having a heart attack due to a piece of the infection breaking off. That resulted in his second valve replacement. Needless to say, our anxiety levels are/will be high. 

Aside from the normal frustrations that go along with any hospital stay is the fact that we know the continued line infections could be avoided or at least reduced. There is a drug that he used for several years in his line that prevents biofilm from forming on the inside of his line. We knew it was off-label and not approved in the US for this purpose. It is approved in the US for many other uses, like in Soda, food, and other stupid things, but not approved to potentially save a life. Go figure. Since he was forced to discontinue the use of it he has had at least three line infections. It literally makes no sense whatsoever.  ‘Merica!

So, Brent will remain in the hospital on IV antibiotics and we anticipate  a new line perhaps on Sunday. He has to wait 48 hours from line extraction. No line means no TPN. That is his 11 hour infusion for all of his nutritional needs that is infused into his blood stream. He has already missed two nights. 

If you’re the praying type, something to pray for would be that  the antibiotics do their job and do it well, avoiding another open heart surgery. 

As always, we are mindful of our support team, you. 

Frustrated

 Today we learned that the line has tested positive for staph epi. That is not good. Staph epi is the bacteria that has caused Brent to have two open heart surgeries for aortic heart valve replacements. Staph epi loves foreign objects. The question is do they try to save the line in hopes of the vancomycin killing off the staph or remove the line before the bacteria can possibly damage the heart? Every time they have to remove the central line it runs the risk of losing IV access. Of course the heart is more important to save. We have asked for Infectious Disease to consult with Dr Caine, Brent’s heart surgeon, to weigh in on the decision. As far as we know that didn’t happen today. The TTE didn’t show any growth on the valve but Dr Caine will most likely want to do a TEE for a better look at the valve. If that is not done tomorrow, I guess that’s today since it’s after midnight now, then it probably won’t be done until Monday or Tuesday because, you know, they can’t do them on the weekend and Monday is a holiday….

So suffice it to say it’s been a disappointing and frustrating day. Our family has been dealing with several other emergencies these past two weeks and we are feeling a bit down, worn out, and honestly just tired of being hit with one thing after another. Sorry for the pity party. 🎶it’s my blog and I’ll cry if I want to…🎵.

 Tomorrow is a new day and I’m sure we will be more positive and clear minded. Just keeping it real for a change.  We do know we are blessed. We do know we have a great team of doctors, we just need them all on the same page. We do know that every day is a blessing. We do know that we are blessed with the prayers of many. We do know that your prayers, love, and many acts of service however big or small are what keeps us going. We are thankful for you. 

Happy Valentines Day

 Well, quick update just to say we really don’t know anything yet. How’s that? It’s always a waiting game for the results of the blood cultures in his central IV line and in his blood stream. One culture has come back positive but they didn’t tell him if it was from the peripheral or from the line or what it was positive for. I haven’t been here much due to other family emergencies so I wasn’t here to ask questions. We are praying that it is not from the line. Other than that he feels ok. The TTE looked clean so that’s very good. Thanks for checking in. Hope your Valentines Day was more romantic than a walk around the hospital floor. Hahaha. 

Deja vu?

 Well, obviously if I’m posting on the blog that means Brent is back in the hospital. My good friend and neighbor just reminded me that Brent was in the hospital last Valentines Day also! I mean, I can think of better ways to avoid buying me diamonds and chocolates. Actually, during his extended stay in 2006 (January -March) Brent’s sister Brenda worked for Morgan Jewelry and I got surprised at the hospital with a great gift that year! Haha. 

In all seriousness though, we suspected something was brewing last week. He ran a low grade fever. Last night he started fevers again and once it hits 101 we have to come in. I feel like I should just direct you to the post from last February 14. It’s pretty accurate other than we don’t think it’s a line infection. The symptoms haven’t matched up for that. The conditions of the ER from last year to this got even worse. It was nutso. We got there at about 9:30 and didn’t even get back to a room until 11:50pm. I have a hard time in the ER for many reasons and one thing I hate is that half of the 50-75 people there are using it as an after hours Doctors office, as in, non-emergency cases. They could easily wait until their Dr office opens the next day or go to Instacare. I’m no doctor (I AM an honorary surgeon though.🤣) and most of the cases are non-emergent. Ugh. 

Once again the ER doc got all hyped up from the CT scan and saw a leak in his intestine and automatically assumes he needs a surgical consult for repair. NO NO NO! Please listen and do your homework (I know Brent’s file is a freaking medical nightmare, but at least compare CT scans and don’t get us all riled up about surgery.) NOBODY wants to go back into his gut. So once we reeled him back in and the surgical resident agreed with us, they started broad spectrum antibiotics. 

At 3:40 am I left and drove back to Provo to serve my temple shift at 4:50. Might have been a dumb move but I wanted to be there. That’s where I find peace. While I was gone his blood pressure tanked and they had to push IV fluids to get it back up to a point where the non ICU floor would take him. He was admitted to a normal room at about 7:00 this morning. His blood pressure has stabilized and he’s just chillin getting IV antibiotics and waiting for culture results and blood work. They did a TTE on his heart and we haven’t heard any results from that yet. It’s always a worry as the heart valve becomes infected quite easily. 

So, here we are, spending another lovely Valentines Day in the hospital and not even in a room with a view. Boo. Praying the ♥️ is healthy and that the infection, wherever and whatever it is is an easy fix with at home IV antibiotics. I’m sure he’ll be cooling his jets for at least a few days in here while they figure things out. As always, thanks for being you and being a part of our team. We love you.