I realize I haven't updated. I apologize. Once we got home things were a little crazy and we're a little sleep deprived. The blog wasn't at the top of my list.

We are truly grateful to be home. We are mindful and so very appreciative of the many prayers sent our way. Really, we are.

Brent came home on two heavy duty IV antibiotics. One has to be administered every 6 hours, which means middle of the night. Between his nightly 11 hour infusion of TPN, and then add the antibiotic, he isn't getting much sleep. The cough from the pneumonia doesn't allow him much sleep either. He does seem to be getting better, but with no immune system, everything takes longer. And when he doesn't sleep, I don't sleep. Hence, the sleep deprivation.

The sepsis from the infection in his jaw is under control and we work with an infectious disease Dr. for that and the pneumonia, because even though it cultured out as viral, it could also be bacterial. Aye-yi-yi.

We try to be so careful with germs. I mean, we even gave his fellow employees a big container of Avegard (hospital grade) hand sanitizer for Christmas! Haha. We are the weirdos who wipe down every shopping cart, we have hand sanitizer on the piano as you enter our home, we wipe down everything in the house with lysol wipes after someone has visited, avoid large crowds, theaters, etc., and at church Brent usually doesn't even shake hands with people, AND, we even use hand sanitizer after handling the sacrament trays that who knows who has touched. But, to no avail, he still caught a virus that landed him in the hospital for eight days. It most likely would just be a common cold for anyone else. Unfortunately, with no immune system, even the common cold can be deadly. I think a lot of people don't realize that.

Anyways, things are slowly getting back to normal. I'm downing gummy vitamin C by the handful and praying I stay healthy. Life will continue and we will continue to enjoy each day.

Thanks for your love and support and for checking in.

Annnnd, we’re finally home. After a long day of waiting for all of the Dr.s to agree, and for the endless paperwork and ordering of all the meds and TPN, we are home. We came home to a counter and fridge full of yummy non hospital food. We have the best friends. We are sitting on the patio enjoying the warm day and waiting for the IV antibiotics to be delivered.

The TEE and the CT scan from yesterday were normal, and we are thankful for that. He went through the night without high fevers also.

Here’s hoping the pneumonia continues to diminish and the fevers stay under control.

Thanks once again for your prayers in our behalf. We are so thankful.

It was a very frustrating day at the hospital. Too many things to list/explain. Suffice it to say, I left home this morning headed to the hospital to kick some butts and take some names. I didn’t really, well, maybe one, but not really. I ask questions and if I don’t think the questions are answered appropriately, I keep asking. Enough is enough. We asked for them to contact our infectious disease doctor when we first got to the ER last Tuesday. They didn’t. We finally got infectious disease on board today. Aye-yi-yi.

Brent had a TEE today to rule out endocarditis. We never did get any results. Not sure if we assume no news is good news or not. Just very frustrating all around. They also ran another CT of his jaw to rule out infection from his oral surgery. No results from that either.

We do acknowledge that Brent is a difficult case, but if they would listen to us and act in a more timely manner, life would be much better.

Anyways, not sure what tomorrow will bring. I was so tired on the way home tonight that I cranked the soundtrack to The Greatest Showman and had the air conditioning on. Here’s hoping for better days.

Thanks for checking in.

Well, we were hoping we could spring Brent from the hospital today, but it didn’t happen. Before releasing him the Doc wanted to do an echo just to be sure the heart valve was ok. He was sure that all would be well and he would be released. They are very confident that the fevers are being caused by the virus/pneumonia. Well, several hours later the cardiologist decided the echo was inconclusive and had a concern so he wants to do a TEE. Well, it’s sunday. Not gonna happen. So, he gets to stay another night and have the TEE tomorrow. His fevers have dropped a bit so that’s good. Here’s hoping tomorrow is the day. Thanks for all of the love. We do feel it and appreciate it.

Not really any new news so far today. He’s still running fevers and coughing. With his history they are hesitant to let him leave.

We are asking for no visitors at this point. Just text him and that will make his day.

Thanks!

I guess if I’m going to ask you all not to text me I should at least post updates huh? Oops.

In the quest to figure out what is causing the fevers (jaw infection, human meta neuro virus, line infection, etc.), we decided to throw one more option into the game. Brent’s chest X-ray taken yesterday showed pneumonia. Yippee!

After talking with the Dr. Today, the plan is to watch the fevers and stay on the antibiotics for another 24 hrs, and then depending on the results he could possibly go home tomorrow. His blood work and cultures look good, white count is back down. The guess is that the initial fevers were from the abscessed jaw that he had worked on last week, and then the nasty human meta neuro virus decided to take over the game and the pneumonia is part of that virus.

When he comes home he will still be on the IV antibiotics, but that’s nothing new. We can do that.

Soooo, just a waiting game now. There seems to be a ‘game’ theme here, and now I understand why he doesn’t like to play board games. His life IS a big game and sometimes the odds are not in his favor.

Thank you so much for your comments and prayers. We do actually feel the power in them. We both were able to get some sleep last night and that is a blessing. Our son, David, who is home on spring break and Granddaughter, Violet, and our Daughter in law, Erin are also sick. Geesh. Enough already.

So, here’s hoping we can get ahead of the pneumonia and Brent can come home.

Wow, it’s been a while. Thankful for that. I decided to reactivate the blog because I am tired of texting and too tired to remember who I texted and what I told to whom. Does that even make sense?

Well, as you guessed, or already know, Brent is back in the hospital. In a nutshell, woke up early Tuesday morning not feeling well and started running fevers. Any fever with Brent means a trip to the ER in Murray. As you know, we have our reasons for not going to UVRMC, and risk the 30-40 minute drive to IMED. The obvious concerns with him and fevers are a line infection and his heart valve. But let’s throw something new into the mix, shall we? He had oral surgery last week on an abscess in his jaw. He was on IV antibiotics at the time but they ended last Wednesday. So, there’s a chance the fevers are being caused by that as well.

While In the ER his blood pressure dropped quite low, and we automatically assume sepsis, since we’ve been down this road a few too many times. They drew cultures from his lines and his arm. They also swabbed his nose and that came back positive for human meta pneumo virus. In most people that presents itself as a bad cold/cough. He wasn’t showing any signs of that. It was a frustrating 6-7 hours in the ER with not much attention and no decisions being made. They kept trying to decide if he would go to the floor or the ICU. His blood pressure finally came up and they sent him to the normal floor.

And there he sits.

As much as I detest the ICU, sometimes I prefer it because they are a little more attentive and determined to find a cause/solution.

It’s been a waiting game for the 48 hour cultures and watching the fevers. But now he has a cough.

The Drs are/were fairly certain it was the jaw that was causing it but after three days of two different heavy duty IV antibiotics he’s still running fevers. Now we are back to the drawing board. Is it the virus? Is it the lines? (Running more cultures) Is it the jaw? Is it the heart? I could take bets and pay the hospital bills with it.

So today he will not be coming home as planned. I’m sure it will be spent having several tests done.

I guess that really wasn’t a nutshell, but now you’re in the know. As in, we know nothing.

If you’ld like to pray, pray for answers. Pray for the medical peeps to figure out what to do. And please pray that we can have strength and sleep. Too many things going on in our family right now. I’m tired. Our family is tired. And you’re probably tired of us asking you to pray for us.

Seriously though. We love you. We are ever mindful of your kindness and thoughts and prayers  in our behalf. We will just keep on keepin on. Like we always do.