Home

 Brent came home tonight. He had his central line replaced. He will be on continuous (24/7) IV antibiotics for at least six weeks. At least he’ll be in style with a manny pack. Haha. 

Good news/bad news

GOOD NEWS: the heart valves look clean!  Yay!  Now just need a PICC line inserted and orders for discharge. 

BAD NEWS:  can’t get a PICC inserted. No accessible, big enough veins to get one inserted. That is not good. Not good at all. 

So now we wait, again.  

sorry for the lack of updates

 It's been a crazy week, month, year, etc. . .  You get it. . . If I don't update, be assured that that usually means there is nothing too terribly crucial to report. 

Brent has been chilling in his hospital room getting all sorts of antibiotics and all of the other good stuff he usually gets in his nightly TPN. 

Blood cultures have been clean for a couple of days nows which is a good sign. -->  No fevers, which is also a good sign. -->  We are used to the signs you see on a mountainous road going every which way and winding back and forth.  -/\__~~^\/---  We'll take the straight forward signs. We're tired. 

Right now Brent is down having a TEE or TTE, not sure which one, but it is so they can see the heart valves from the inside. It's a much better visual than a CT or an ECHO to see if the bacteria has caused any growth on the heart valves. We are praying hard that the heart is clean. If so, he may come home today. If not, well, who knows. 

In order to come home, he has to have a PICC placed in his arm so he can do his TPN at home. You can't administer TPN in a normal peripheral IV. If the heart is clean, we just wait to see how long his Infectious Disease Dr, wants to wait until he can have another central line placed in his chest. She usually keeps him on the IV antibiotics for a month or so before she will sign off on it. Better to be safe than sorry with Brent. 

So, now I'm just chilling in his room waiting. We live a life of constantly waiting. Waiting for procedures, waiting for doctors, waiting for test results, waiting for news sometimes good, sometimes devastating, waiting for the inevitable meltdown, waiting for sweet appreciated prayers to be uttered by so many of you, waiting for those prayers to be answered, waiting for the beautiful tender mercies, waiting for the many miracles and being ever-so-thankful for the many we have witnessed, waiting for the chance to live life normally for a change and go to the mountains, waiting for peace to come on those dark days when life is nothing even resembling normalcy . . . just always waiting. 

We will let you know what the TEE shows. Here's hoping and praying it is clean. 

ALSO, so many of you commented on the last post, but it just says 'anonymous' so I have no idea who you are but thank you. We love you. We love our team of family and friends. We love our circle of people that take such good care of us and we feel of your love and strength. It truly takes a village to get through life and we are thankful for ours.  

. . .

 Well, Brent was admitted on Wednesday night with a fever of 104+. We initially thought he started running a fever because Ela (our granddaughter that lives with us) has been sick and he probably caught what she has. It started as a low grade but escalated quickly and he won a trip to Murray ER. 

Fast forward to today where he still sits here being pumped with antibiotics and we are told that the blood cultures have tested positive for a rare bacteria in his bloodstream and also out of his central lines. 🤬. This was not what we were hoping to hear. This particular bacteria is very sticky and clings to foreign objects, also not what we want to hear. The central line has now been removed, which is very disheartening because it was just replaced in February. This bacteria is also dangerous for his artificial heart valve. That is THE biggest concern right now. To have to replace the heart valve a third time would be dangerous and you lose percentage of success and effectiveness with each replacement. 🤬🤬. 

Of course they are throwing all of the big gun antibiotics at it. There’s also a debate going on as to if it’s safe to start his TPN (his IV nutrition) because you don’t want to feed the bacteria a bunch of nutrients.  Way too many things to consider when dealing with Brent’s poor body. 

If you’re the praying type and like specific things to pray about, pray the heart is clean. Thanks a million. Love you all. 

Well, still no answers

 Well, it's been six days of being in the hospital, and there are still no answers as to what brought him there in the first place. I mean, the fevers brought him in to the ER, but the reasons behind the fevers are still unknown. The original diagnosis of pneumonia was pretty much thrown out by the pulmonologists. 

This is the update Brent sent to his Computer architects group that explains it in techy terms:

"This is what I told the architects - Lisa will update the blog sometime today, but to put it in terms most of us are familiar with, we are now looking at a “ghost in the machine” issue. Four times in three years with the same “pneumonia”, in exactly the same spot in one lung, absolutely nothing to see when they scope it, and the accompanying fever goes away after they flush out my lungs as part of the scope process. There is now a team just like the one we put together that will review everything because everybody is stumped. But at least we know exactly the pattern it presents with (just like our AWS canary) so when it does show up they know what to do to resolve the issue - I just wish it was a little less draconian than flushing out my lungs. You are fully sedated but waking up is not a lot of fun. I should be out on Friday. Today and tomorrow are mostly just observation to be sure I don’t just show up again in a few days."

So, actually Brent will come home this afternoon sometime. His case will go before the pulmonologist board in the next week or so to review his records and talk about any new ideas, biopsies, recommendations, etc. There is just no evidence of anything at all, but there is something. As Brent put it, it's a ghost in the machine. We are still thankful for a Dr who is willing to research and not treat Brent as a normal patient with a normal bout of pneumonia. 

We now just need to pray that the fevers stay away and that somehow answers will come, as this unknown condition has now put him in the hospital four times. Also praying that it is not a side effect of the Stelara he injects once a month to keep the Crohn's at bay. He has run out of options for Crohn's treatments. 

Thanks for your continued support of us and our family. It is appreciated and noticed and we love you. 

no news means no idea . . .

 I'm sorry I haven't updated for those of you that check faithfully and love us. A) I haven't had time. B) there's not a lot to report.

When Brent was admitted on Saturday, it was under the pretense that he had pneumonia. Brent has been admitted four times over the past 3-4 years with pneumonia and each time never showing symptoms of pneumonia other than unexplained fevers. When they do chest x-rays or chest CT's clouding is seen and thus the diagnosis of pneumonia.  And, nobody has ever questioned it. 

So, yesterday when the hospitalist pulmonologist came in, she was a bit baffled. None of the cultures taken in the ER have shown any growth (and for this we are VERY thankful, especially from the central line.) However, with nothing growing they have no idea what bacteria, if any, they are dealing with. Obviously he isn't responding well to the two heavy hitter IV antibiotics they've been giving him because he is still running fevers as soon as the tylenol wears off.  I told the pulmonologist that every time he's been admitted it's been the same scenario, no symptoms whatsoever except the fevers. She decided she wanted to do a bronchoscope which is a washing of the lungs, and take biopsies and samples. He's had this done before. It's not a pleasant procedure. 

Fast forward a few hours later, and she returned to his room even more baffled. She had gone back and looked at all of the pulmonology notes and CT's and x-rays from previous admits. She saw that each time the clouding/suspected pneumonia is in the exact same place. That is not indicative of classic pneumonia.  It doesn't just reappear a year later in the exact same spot. She scheduled an interventional pulmonologist to do the bronchoscope instead. The test took place this morning. Obviously there are no answers yet. 

There are a few theories floating around, but nothing concrete yet. She is concerned that perhaps it is from the Stelara that he takes for his Crohn's which has a side effect of pulmonary infections. She also said that sometimes heart valve problems (he's had two aortic valve replacements) can also cause pulmonary infections. They have now tested him for every possible bug/virus/bacteria under the sun. They also moved him to a negative pressure room and the nurses have to mask and gown because they have absolutely no idea what is causing his fevers or the dense clouding in his lung.  So, that is why I haven't updated. There's nothing to report. Brent is still running fevers and there are still no answers. 

We are thankful that someone is finally connecting the dots and trying to finish the picture. We are thankful that there is nothing growing from the cultures, especially in the central line. We are thankful for Dr's that actually think outside the box and realize that Brent is anything but a normal patient.  We are thankful for prayers said in his behalf. They are felt. 

We’re Baaaack

 Well we headed to the ER yesterday afternoon after Brent spiked a fever. The rule is if he goes over 100 we head to the ER. Chest X-ray showed pneumonia. They also took blood cultures from his central line to rule out a line infection. Those results aren’t back yet. 

While in the ER he spiked high fevers of 104+ and his heart rate doubled. He tanked super fast. We always warn them that when he crashes he crashes hard and fast. The ER doc didn’t really believe us but he does now. Ha. 

They admitted him after stabilizing him and here we sit. He’s getting two IV antibiotics and just waiting for the cultures to come back. He’s looking and feeling much better today. 

We are praying the cultures come back clean, as this central line was just replaced in March after a line infection. 🙏🤞. We hope this is a short stay and that we will go home with IV antibiotics. So here’s hoping and praying for clean cultures and that he continues to improve. 

He’s home!

 After a disappointing and frustrating day, Brent was finally released at 7:00 tonight. 

His PICC was placed but only a single lumen. They were not able to place a double lumen, which he really needs, due to lack of vein access. That’s quiet concerning. 

He will be on IV antibiotics for several weeks and then he can get his central line replaced. Let’s pray that the PICC remains a viable option until then. 

We are thankful to be home. We are thankful for prayers and thoughts and good vibes. We are thankful for doctors that listen. 

I’m sure Elanor will be so excited to wake up to Papa being home.

From the patient himself:

Current very tentative plan is to watch the cultures through tomorrow morning. If they remain clear then they’ll put a PICC line in and I’ll go home late tomorrow on IV antibiotics and restart my TPN Sunday night. That depends on cardiology deciding that whatever is on the mitral valve is nothing to worry about. I should hear from my heart surgeon sometime today.

So there you have it. Just need to see what the cardiologist says. Here’s hoping for a tomorrow release! We have done at home IV antibiotics dozens of times so that’s no big deal. Here’s hoping. 

No news? Good news?

 We're not too sure if we have good news because we're really not too used to getting good news. The news we did get was kind of blurred towards the positive so I guess we can be cautiously optimistic? 

Brent had his TEE this afternoon. The nurse said it looked good. The Infectious Disease doc was just in and he said the aortic valve was clean (very thankful) and the mitral valve showed something, but he's not thinking it is infectious growth. He did not have an idea of what it might be though. This really is good news for the aortic valve. Our cardiac surgeon does NOT want to replace that one again anytime soon. Each time you replace it the success rate goes down exponentially. I don't think 'the third time's the charm' applies to heart valves. 

The doc also said that Brent's blood cultures have been clean since Tuesday's draw which is also good news. If they remain clear through tomorrow then they can insert a PICC line in preparation for going home. He has to have a PICC line for his nightly TPN while waiting until he can have another central line placed. They will likely have to wait for the central line until he is on IV antibiotics for quite awhile. 

Todays prayers? A prayer of gratitude for a clean valve and clean cultures and modern medicine. OH, and that I have a Cubby's salad waiting for me at home. Ha. We have great friends.  Prayer request for continued clean blood cultures so he can get his PICC and come home! Also, that whatever they saw on the TEE on the mitral valve is nothing concerning. 

Thanks for checking in. Thanks for your love and prayers. Thanks for good news. 

 Text from Brent this morning:

"Hospitalists were just here. Echo showed the aortic valve looked ok but the mitral valve may have issues. TEE tomorrow. Probably be here for a few more days at least."

So, we wait until tomorrow to panic or not panic. Thankful the aortic valve looked clean, but a bit worried bout the mitral valve. The TEE should give them a clear picture if anything is growing. 

Brent's central IV line was removed yesterday. This one lasted over two years which is amazing. We are grateful for good Dr's that have tried unconventional methods to keep his line clear. He will need to have a PICC placed before going home so that he can do his TPN every night. Right now they are not giving him his TPN, so we need to watch dehydration and try to get some calories in him. 

That's about it for now. He's bored, so text him a joke or something. 

So, once again, we're praying for the heart, from the heart. Love you. 

Happy Day of Love

 Happy Valentines Day. 

In times of crisis we often are reminded of all those that we love and who love us. I was re-reading some blogposts to retrieve some dates and info, and I am constantly in awe of the love and support that we receive as a family. Truly, your love in many forms is what gets us through good and not so good times. 

So, obviously, I'm updating for a reason other than to thank you for your constant love. Last night Brent spiked a fever. Protocol for him is to head to the ER for anything over 100. He was 101+. We were feeling ok to go to Murray, meaning he wasn't crashing hard and fast. So, just a public service announcement . . . stay healthy. The ER was insane and the hospital was full and on Divert for all ambulances. Spent nine hours in the ER and finally got a room. Fever wasn't breaking and his blood pressure was getting low but CT scan looked good and initial blood work was good. Cultures were drawn from his central IV line. No obvious cause of the infection/fevers. The IV line is always the first suspected cause, and rightfully so. He's been septic so many times due to line infections even though he is meticulous about his line care. 

This afternoon the cultures already show positive for staph aureus. His central IV line has to come out. This is very frustrating for several reasons that I won't elaborate on because some of them are quite maddening. The Dr's will also check the heart valve extensively to make sure that the staph hasn't gone to the artificial aortic valve. 

So far, he is being given broad spectrum IV antibiotics. 

Some of you like specific things to focus your prayers and energy on. If so, please pray that the heart valve is clean and that the staph isn't in his blood stream. If it is contained in the IV line, that would be best case scenario. The necessity of a  third heart valve transplant is not good. 

So, on this day of Love, with the symbol of a heart, how apropos that we pray for Brent's heart and to recognize the good hearts of all of you, and especially the love of our Heavenly Father and Savior. Love is found in many forms. Thank you for your love.