Miracle #1: Check :)

Hey guys,

This is Leah, reporting to you from Rm 409 of the Intermountain Medical Center in Murray, Utah. Here's what happened over the course of the week with Tony:

Monday:

No change - the infection is there, and they still don't know what it is. Tony's fevers still weren't coming down, somewhere in the low 100s, and he was still feeling miserable. He was probably having fevers and chills maybe 2-3 times a day, and it wasn't pleasant. He was getting food here at the hospital, but often he would pass the food by, because he wasn't hungry. Didn't have much of an appetite. He also had a CT scan, and still no change. Still, he found time to have a sense of humor. 😁

We got to spend time together as a family with him that evening. We walked around the hospital floor for an activity and enjoyed some lovely sugar-free treats, courtesy of the hospital vending machine.

Also, I would go down to the first floor to see my children off as they'd leave to go back home, and this hallway always scared me, especially when I was alone. It's scary being alone on the ENTIRE first floor and waiting for the elevator by myself *shudder*

Tuesday:

Was a hard day. Went for a walk around the hospital floor,

then Tony came back and took a shower, and after putting on clothes, he started shivering uncontrollably. Dr. Doty calls it Rigors. To me, it was scary to watch him have these chills that he couldn't seem to control; his lips would turn blue, and he'd have these violent shivers that wouldn't stop, even with numerous warmed blankets on him to warm him up.

It took him 45 minutes to get back to normal temps. We spoke with the Infectious Disease (ID) team (in the latter part of the afternoon into the evening) as well, and visiting with them was just as painful: despite all the blood tests they had done on him, they still don't know what the infection is, and they shared our concerns for this whole rock-and-hard-place situation, and they also seemed to be in a place of hopelessness (maybe it was reality, I wouldn't have known. Either one at that time felt the same) as they couldn't provide any solutions for us. After our conversation with some members of the ID team, I remember seeing Tony sitting at the mobile table, with his head in his hands, and he looked beat. Reminded me of those looks I see on my children's faces when they've lost game after game after game. I felt so sorry for him. Maybe he was just tired, because it had already been a fever/chills day and it was taxing on him, and he HATES it when he gets those chills. He still had his head in his hands when someone knocked on our door. I opened it, and let the guest in. I don't think Tony had expected to see him, but when he turned to see who the guest was, he just broke down, stood up and gave him a hug and held on to him for a bit. It was a welcome sight to see Chad Wilkinson.

We got to have our very own private time with him - just the three of us, and man, it was just what we needed. One of the MANY important reminders that I took away from our visit with him was that we shouldn't take counsel from our fears. What timely counsel! Our time with him was sacred and special, and we will remember it with fondness and gratitude forever. Thank you, sir. We love you so much.

Wednesday:

Tony was still getting fevers, but this time, he began to tell when he was starting to get chills so he would focus on warm thoughts when he began to feel cold. Mind you, it wasn't cold in his room, but he still felt chills. One time when I saw that he was working through the chills, I played for him what I thought was "warm" music. I don't know if it helped, but he didn't appear to experience the full effects of chills, so I'd like to think it had something to do with it. Or maybe it was the medication. 😉

He began to be more aware of his fevers and chills, paying attention to the "triggers", and he worked hard to avoid the triggers that'd put him there. It was a better day. We even went for walks around the hospital floor a couple of times, and it was good.

Thursday:

Fevers are beginning to come down. Hasn't had chills, but he has slept A LOT! A lot a lot! Wonder if he's beginning to finally sleep after all those weeks of fevers and chills and sweats. He seems to be doing better. Sooo grateful!

Friday:

We found out that Tony has what is called Culture-Negative Endocarditis, where there's an infection in his heart, but all the blood culture tests that they've done on him have come up negative, due to the fact that he is currently on antibiotics. It appears that members of the ID team have done blood culture tests to see if anything will show up, but so far, nothing, hence the broad spectrum of antibiotics that he is currently taking at this time. 

We also got an email from our son, Taylor, 

who is currently serving in the Italy Rome Mission, and who is currently serving on the island of Malta:

"I've been praying and studying and I even included it in my fast on Sunday, and I've come to the conclusion that it'd be best for me to remain in the mission rather than come home early or come home and go back out. My heart wants to come home more than anything, but if I say I have faith I feel like I need to show that. Right now, I feel like the best way for me to show my faith in God is by staying here and working my hardest. 

"And on that same note, I know there're a lot of people out there suffering more than I am. When I think about it, we've all actually got it pretty good right now. We've got knowledge of the plan of salvation. We know families are eternal. Beyond that, we have the greatest faith that everything is going to work out fine and dad will be okay. And I love that! But there are people out there who don't know that, and that's what I'm here for. So I'm going to work even harder at sharing the joy and peace we have in the hopes that somehow, God will help some more people through us. But if none of that works out, well I'm staying here anyways because that's what faith means. Just know I love you guys and pray for you on the daily -- and many other people are doing the same. 

"All the love for all the days!❤️❤️❤️"

We weren't surprised or saddened by his letter, but respect very much his desire to stay out until his mission is done, and are happy for him and for us. 

Tony and I had a date night...on his hospital bed. We watched the first 5 minutes of the second season of Stranger Things on Netflix and he fell asleep. 

It was too scary for me to watch by myself in the dark, so I turned on the lights and let him sleep. I'm so glad to see that he's getting some reprieve from his fevers and chills, and I imagine that he has been so tired from fighting for so long. 

Saturday:

There's still no change with Tony's infection, but it appears that the antibiotics are working for him! He is currently on 4 different antibiotics, and he LOATHES one more than any of the others: Rifampin. It makes his sweat, tears and other bodily excretions look orange, and, to him, it smells, reeks even, of vomit. Woof. Buuuut, he's feeling better. We met with another ID team member who listened to all of our concerns and she took the time not only to listen to any and every concern that we had, but to explain that being on all 4 of these antibiotics can't be good for his organs, and one of the concerns for them at this time has been the effects of the antibiotics on his kidneys. So now the question is, if Tony is doing better and can't have all 4 antibiotics because it'll do some damage to his organs, which of these antibiotics will they drop? They want to maximize containing the infection while minimizing damage. We'll see what happens. But whatever the case, we are just so grateful that Thor is finally getting some relief from being as sick as he has been. It would make sense that he is tired all the time now because his body has been fighting/in survivor mode for nearly a month, so now that he's finally not dealing with fevers and chills, we're just so grateful that he's actually sleeping these days.

At present, Tony still has a bit of a temperature, but he hasn't been having steady 103/104 degree temps and chills in a couple of days; he actually broke 100 degrees sometime over the weekend, and it is looking like things are s-l-o-w-l-y getting back to normal. His appetite is coming back, although he says that things taste differently to him. We've heard that being on antibiotics has a way of messing with the taste buds, so for now, that's something we'll happily deal with. Tony is still not out of the woods yet by any means. We have a LOOOONG way to go. We know that something needs to be done about the infection in his heart, but we are hoping to find a non-surgical solution, so we are begging, pretty please, if you haven't yet felt worn out by our pleas to you, would you be okay, regardless of your beliefs or background, joining us in praying to/communing with whatever Power you believe in on Tony's behalf, in finding a non-surgical solution to this matter, please? We know we are already indebted to all of you. We could not even BEGIN to tell you how indebted we are to you for your prayers, texts and messages of concern and encouragement, phone calls, visits, treats, fasts, love and support for our family. We pray for YOU, because we are sooooo grateful for you. Thank you for your help in accomplishing the first miracle we'd asked for: His fever to break. It has been going down and we are TRULY grateful. Thank you thank you thank you all. 

Through the weeks that we have been here, we have also gotten the opportunity to meet with and listen to stories of a few of the people who work here in the hospital, like the newly-wed nurse or the the nurse/mother of six who is trying to make ends meet in their homes, or the phlebotomist from Croatia who moved here as a refugee years ago to escape the war that was going on in her country, to the twenty-something-year-old nurse's aide who moved here from Thailand who lost his father to a disease when he was 7 and who is now the main provider for his family, to the cleaning lady from Peru whose daughter passed away in the very cardiac unit we are in. It provided great perspective for us, as it helped take us out of seeing only ourselves. It also reminded us to be grateful, even in our situation. It has been a humbling experience to meet them, to hear their stories and to know that there is always someone who has it harder, who has it worse than we do and yet still manages to serve and do it with a smile. How grateful we are for perspective provided by the least of these. We desire to be such a people for others as well. 

We want you to know we love you, and we are grateful for you. We are grateful for all that you do for us. We pray for you. How could we not? Thank you for blessing our lives. May peace be yours in your journey at this time as well. We love you. Thank you for everything.

All our love,

Hansen crew xoxo

Playing cards in Dad's room

Visiting with Randy Tyson

Visiting with Tom Marsden 

✔

peace be the journey

Still coming at you live from room 409 aka the Hansen home 2.0!!! We were supposed to be at Disneyland today but it's fine. 🙄

Since we last updated the blog, not a lot has changed physically with Mr. Thor. The idea of surgery is still on the table, but at the moment we're mostly trying to figure out what infection he's fighting and monitor how the antibiotics are helping. The most obvious temporal effect is that they're causing dad to retain a lot of water. Stoked as he was to have gained 20 pounds in swelling in the last week, he's pretty excited about his new meds that make him pass water more quickly 😅

There are some really joyous other updates, though. Up until this weekend, our brother Taylor--who's currently serving in the Rome, Italy mission for the Church of Jesus Christ of Latter-day Saints--didn't know a whole lot about my dad's situation. The heart surgeon had been saying that if dad has surgery, we should probably have Taylor come home beforehand just in case. We had avoided talking to Taylor about it all since we didn't want him to worry when things hadn't been decided yet, but after emailing his mission president Friday night we set up a skype session for Saturday afternoon.

Our family has always been close and we've had some special moments throughout the years, but that grainy Skype call between Malta and IMC was probably one of the most sacred and precious times we've ever had. It was really hard for Taylor to hear about how severe the circumstances are and his reaction was hard for us to watch, but it lead to a beautiful conversation about what happens next. We talked about our hopes for dad to recover fully and soon and found common ground in that, but we also got to talk about the fact that it might not happen. What a humbling expression of faith it was to hear all my family members assert that they want my dad to be healed and that they believe it's possible, but that even if God doesn't answer our prayers the way we want, we will all still be okay. My mom talked about how she and my dad had decided together the night before that no matter what happens, their goal is for us all to experience peace on this journey. Peace in the midst of the storm. Good feelings with and toward the people we're working with. Peace today and peace with what happens next. That's something we all feel good about.

Dad had some strong opinions to share, too. He said that he's glad we have all come to terms with the "but if not" factor, but that he thinks of this as a time for us to "call down the powers of heaven." He testified that God is a God of miracles, and that he is going to expect to see those during this time. Specifically, the miracles he's looking and praying and fasting for are these:
 - his fever to break
 - the infection to be identified so they can know how to treat it
 - a non-surgical solution
(for Disney to fund a trip to Disneyland since we were supposed to be there this week) (just kidding) (mostly)
It might seem like a lot to ask for, but we're trusting that when we give what we can to the Lord, small as it may be, He is able to multiply our efforts and show His dominance over the "impossible." Thus the specific prayers and focus on the little things...making sure he eats protein, gets his exercise, etc. We have already seen so many evidences of His hand, and how grateful we are! How excited we are! And how humbled and happy we are to be on this journey together.

Thank you all for your support and kindness and love. Sorry for texts or messages that we miss in the midst of all this, but please know we're grateful. And please know how valuable you are in making these miracles happen! We invite--and even ask--that you, regardless of your beliefs or background, join us in praying to whatever power you believe in to make these things (only the first three...those would make anywhere "the happiest place on earth") happen. We have a lot of faith and hope that by coming together for the greater good, we can see incredible things accomplished. #teamthor

Much love,

The Hansens

day 3 in room 409

Hi friends hi hi hi hi hi.

First of all, thank you so much for the love and support. There isn't much anyone can do to help right now, but the outpouring of kindness and concern we've seen and felt has been both inspiring and humbling. There is a lot of good left in the world, and we are grateful witnesses.

Since Tuesday when he first got admitted into the hospital, not a lot has changed with my dad's overall condition. He's had ups and downs in his day-to-day strength and energy levels, but the infection is still there and eluding identification. However, even though things are more or less the same, we have gotten an unreal amount of information and updates in the last 24 hours. Here is an abridged list of today's events.

- Dad was pretty tired this morning and found out his blood pressure was really low. The doctors were actually afraid there was a blood leak somewhere in his heart causing his blood pressure to sink.

- Dad went to get another CT scan on his heart (his second since Tuesday) to get some images from that region
- They found blood cells in his urine so in order to tell if the bleeding was really going on, he had to poop in a "hat"...which he enjoyed more than he probably should have

thankfully he hasn't lost his sense of humor am i right😅

- We were all in a good mood and things were fine but someone came in and accidentally mentioned that if dad wants to shower like he's wanted to today, he should do it now because he could be going into surgery soon to fix the leak as it was getting urgent. We all kind of sat there in confused shock and waited for the doctor to come give an official statement of his own
- After a while, Dad ate lunch while listening to acdc's Back in Black with a lot of attitude...aka he seemed really normal. Dad stuttered over a piece of chicken and apparently his heart stopped for 5.2 seconds. He felt it but didn't pay it much mind...but seven nurses literally ran into the room while he calmly continued eating his chicken. Typical Tony...he was in a good place and stayed there, even after all that.

- We heard that they'd talked to the PA about the heart stopping and leakage and whatnot and he said that he's thinking they actually won't need surgery at this point (!!!). Sweet relief.

- Tia went on her first date (congratulations Tia) and he was kind enough to do it in a hospital cafeteria to be accommodating

- Dr. Doty himself made an appearance and said that things are in about the same place as they've been. It's still looking like the antibiotics alone won't be enough to fight the infection, especially if things like irregularity of rhythm in his heart continue or increase. He reiterated that my dad's heart is in a fragile position and that if they have to operate to remove the abscess, there's a decent chance there wouldn't be enough healthy tissue there to put it back together again. 

- We found out that Chick Fil A delivers to this hospital and there was a Modern Family marathon on USA Network. #blessed

Even though that last interaction with the doctor was nothing new, it was still hard to remember. The range of emotion we've felt in the last few days has matched the oscillation of information we've received. However, peace has come in many forms and moments this week. From the love of others to the optimism and fight of my dad to the reminder that regardless of the outcome, Jesus is still the victor, there has been a lot of goodness and that's what we're trying to focus on. 

tl;dr, Tony is fighting the good fight. We are hopeful. Life is heavy but God is good.

x - nela

It's time to get down to the heart of the matter

So hey guys, this is Tony

He was born with a congenital heart defect and long story short, he has has had three open-heart surgeries to replace some of his heart valves. 

One of his heart valves, his aortic valve, 

has an abscess of infection surrounding it at the root

(Photo source: Intermountain healthcare.org)

My understanding from what the doctors have said is that if the abscess has caused damage to the aortic root, if they do open-heart surgery to remove the abscess, there's a chance that the root will be so far damaged that they will have to extract it completely. At that point, the valve would have nothing to connect it with the heart, and Tony would be gone. We've been told that since he has already had 3 surgeries, the chances of this surgery being a success is 50/50, so we are already starting out with "three strikes."

The infection is still unidentified, so he's on 4 different antibiotics to cover the bases to fight the infection and also to ensure that there is no infection in his bloodstream, which would also be bad. 

If you are a praying person, or if you believe in God, the Universe, a Higher Power, whatever your belief, if you wouldn't mind appealing to Him for my husband, please, I would be most grateful. 

xoxo,

Leah