Good bye, Trader Joes . . .

Well, after five months on IV heavy duty antibiotics, Brent is now antibiotic free. :)

We are not sure whether to be happy or to be scared to death.

It is for the best. The second TEE last week showed no infection on the valve, which is awesome.

So now we just sit back and wait, and hope, and pray, and cross all our fingers and toes, and hope that all is well, and that the infection is under control and doesn't make a reappearance.

Really, the only down side of not being on IV antibiotics anymore is that we no longer need to visit the infectious disease doctor. Not that we loved her or anything . . . the truth is, her office was just a few blocks from Trader Joes. Let's be honest, it was quite convenient to just drop in after every appointment. We kind of really like Trader Joes. We really need one in Provo . . .

We love you, thank you for always checking up on us, and for your constant thoughts and prayers.

Lisa

Well, not a whole lot of news. When Brent was in the CICU in August, the Dr ordered a cardiac MRI. He had that a couple of weeks ago. We have access to our medical records via the internet, and usually get the results of his tests before the Dr. does. We read the report from the MRI, and were quite discouraged. It repeatedly stated that there was more endocarditis on the new heart valve and on the heart itself. Endocarditis is what started all of this fun. We were, of course, thinking the worst, and wondered if he would need another valve replacement. He has been on IV antibiotics since the open heart surgery in May.

We received a phone call from Dr Caine, the cardiac surgeon, on Labor day, and he said unfortunately the next step was to have a TEE, which is a transesophageal echocardiogram. Basically it is an echocardiogram done from the inside of your esophagus. He wanted to be absolutely certain that there was/wasn't infection on the valve. We scheduled it for the next day, both took off work, and got to the hospital in Murray only to find out that he was scheduled for the wrong test . . . and they wouldn't do it that day because he had had a glass of water several hours before . . . in other words, the person doing the TEE didn't want to add him onto the schedule since it was nearing the end of the work day. Grrrr. so, scheduled the right test for the next day . . . both took off work again, and the TEE was done. The Dr. that performed it was extremely thorough, knowing Brent's history, and said without a doubt that he did NOT see any endocarditis.

We kind of just sat there, not quite knowing what to say or how to react. We aren't used to good news, only bad news. It's funny when you are so accustomed to receiving bad news over and over again, when you get good news, you are stunned. Don't get me wrong, we were elated, thankful, ecstatic, etc., but it was just weird. The Dr wants to repeat the TEE in a month to make sure there is no change.

So, tomorrow we have two appointments, one with the cardiologist that treated Brent in the CICU, and one with the infectious disease Dr that is handling the IV antibiotics. Hopefully we will have a plan to wean off of the antibiotics, and hopefully he can get his Hickman tunnel IV line put back in soon. The PICC line just isn't as convenient or as permanent.

This heart thing is just crazy. We know guts, not hearts.

The paricarditis that he has, the pain that put him in the CICU in August, seems to be getting better.

Thanks for always checking in, and for the love and prayers.

Lisa

I've been chastised for not updating the blog. I honestly forgot. Sorry. I posted something on Facebook that said "home again, home again, jiggety jig."

After waiting all day yesterday, the Dr finally came in at about 3:00. Brent was in the recliner and I was sleeping in his bed. The Dr said, "huh, you've traded places, must be time to go home." Ha.

To sum it up, the echocardiogram was good, and no changes in the valve since the last one. The paricarditis which is fluid buildup in the sac around the heart, is the cause of his pain in his chest and neck. The symptoms are synonymous with a heart attack. That is why they first assumed it was a heart attack because they want to rule out the worst case scenario first. He also said that there is fluid on the inside of the sac, 'which they never see'. I almost wanted to laugh and ask him if he knew how many times we have been told that. He had had a long day in the cath lab so we decided not to say anything. Supposedly the paricarditis will resolve itself within a few weeks. He will have an MRI in the next couple of weeks to see if there is an underlying reason for the paricarditis.

So, once again, Brent walked out of the ICU. The nurses all looked at us funny. I don't think they often see patients walk out of the ICU. Life went on as normal today with Brent and I going to work and he and michelle fixing the dryer. Brent continues to defy all the odds and amazing all the neighbors as we went for a walk last night around the neighborhood after getting home.

Thank you for checking in and for your thoughts and prayers in our behalf. We love you.

Lisa

Just when I was getting used to saying,"Brent's doing great!"

I have been meaning to update the blog for a week now, and just haven't had time. I was going to post about all of the fun things we have been able to do this summer. The cabin, as posted in the previous blog post, was amazing, and Brent and I went camping two weeks ago up Fairview canyon and had a relaxing time fishing and wasting time. Last week was the annual Salmon Dinner in Payson. It was the best salmon, and good company. If you've never been, you need to go. We love our friends. Thursday we had the opportunity to go to the Paul McCartney concert in Salt Lake. AMAZING!!! I haven't been to a true rock concert since I was a teenager, and it was a Rush concert. Ha. Paul put on an amazing concert and it was so much fun.

This morning, however, brought reality back to us. Brent woke me up and said we needed to go to the ER. He wasn't feeling well and the left side of his chest and neck were in pain. He had just had his $14,000 injection last night, and usually feels like crap for a day or two, but this was different. Awesome.

Did you know that Saturday morning is a great time to go to the ER? And, if you walk in and say you are having chest pain, you are immediately wheeled back to a room and have an EKG going in three minutes? And they look at your chest and see scars and then even more people show up and things happen rather quickly. It was crazy. I've never seen such quick work in an ER, and I consider myself an expert observer.

Note to self: when the ER doc mentions that the EKG shows that he might be having a heart attack, don't panic. Or, maybe you should panic. I did. That all too familiar kick in the gut nauseating feeling returned. They whisked him off to the cath lab and sent me to the waiting room. About 2 hrs later they brought him to the Cardio ICU. The Dr said the angiogram looked great and all arteries looked clean. He said they would do an echocardiogram to look at the recently replaced valve. He ruled out a heart attack, and said it was paricarditis, which is fluid in the sac around the heart. Not sure why or how. They just finished doing the echocardiogram when I left tonight at about 8:00. I doubt we will hear anything until tomorrow.

So, Brent is cooling his jets in the CICU up in Murray, hopefully getting some rest. I guess tomorrow will bring some answers.

Thanks to those who have already offered thoughts and prayers. Just goes to show that everything can change in an instant. It's sad to say that we are used to it. Don't have to like it though.

Lisa

Brent is doing remarkably well. We were able to get away for a few days last week and we headed up to Dennis and Jan's cabin up above Zion's, near Kolob Reservoir. It was a great getaway. We fished, relaxed, fished some more, relaxed some more, watched hummingbirds and squirrels fight over the feeders, went to Zions and hiked, and generally just had a good time. I will brag and say that I, yes, the Momma, caught the most fish AND the biggest fish. :) My daddy taught me well.

Brent is still on a daily regimen of IV antibiotics. This will continue until at least August 15th. That will be 3 months from surgery. Then the Dr. will determine what action to take with the leak that was detected at our last appointment. We are hoping and praying that it is nothing serious, and has resolved itself.

Brent is back to work and being busy.

Thanks for checking in.

Brent is doing really well. The medication for the Afib episodes is working, and he has not had any since starting the medication. Yay! He has been back to work, and I understand that today when some of his co workers saw him coming from the stairwell, and not the elevator,  they were quite shocked. :) I guess participating in the stress test showed him that he can push it a bit.

We keep commenting that this is just weird. We have become so accustomed to very long and arduous recoveries, that we are kind of in shock, but we will take it! We will take the quick recovery, the strength, and the energy that he has been blessed with, and feel ever so thankful. Thanks for checking in. Thanks for your love and concern. We do appreciate you.

Lisa

Today was an interesting day, very long, but interesting. We had our appt. with Dr. Day, the electro physiologist, at IMED, at 10:30. We really like him. He said that the episodes of AFib that Brent is having several times a day are quite normal for someone who just had a valve replacement as extensive as his was. That's all we wanted to hear! We just wanted someone to tell us that it is normal. He wanted Brent to undergo a stress test before prescribing a medication for the arythmia. There wasn't an opening until 2:30, so we went to lunch, Brent had a conference call for work, and I read. Woo hoo! I am quite good at wasting time in a hospital. You could probably even go so far as to say I have perfected the art of it. Sigh.

The stress test stressed me out more than Brent. I seriously thought they were going to cause a heart attack! Geesh. He hasn't walked that far, that fast, at a steep incline since his scoutmaster days. But, it was all good news. After meeting with Dr. Day again, he said his heart looked great and he could start the medication. Yay! So here's hoping it works.

All is going well. Brent is still recovering really well and miraculously quick. The episodes of AFib are still occurring, and we have an appointment with an electro physiologist next week. We have kind of stopped worrying about them so much . . . kind of. We will see the same Dr that Tina sees and who did her oblation. I had to take things into my own hands since we never did hear back from the surgeon. Grrrr.

Brent and David wanted to go fishing but I told Brent I would only take him if he could find a spot that has cell phone service. We went to Burraston Ponds and had a great time. David took the pontoon boat out, while Brent and I fished from shore. We actually caught fish! Woo hoo! And his heart was fine! He didn't go into AFib until we got home. Ha.

Then last night we decided to see what his heart would do with altitude. We drove up to Sundance and had dinner and a smoothie. :) his heart did great! We wanted to see how he would do at altitude so we could see if camping or Dennis' cabin is even an option. I guess things will all depend on what Dr. Day says on Tuesday.

So, all in all, things with Brent are going pretty good. He has even gone into work a few times. He's pretty bored.

We appreciate all of the well wishes and comments from everyone. As always, we are nothing without our support crew. Love you all.

Lisa

We had a little scare Thursday morning at about 1:30. Brent woke me up and said "get Michelle." His heart was racing at about 190. Michelle listened to his heart and said we needed to go to the ER. Woo hoo! Not knowing if this was life threatening or not, we went to UVRMC, not IMED.

I have always thought that the ER stood for "emergency." The place was deserted, which was a plus seeing no other patients, but there was also no medical personnel. I looked in all of the triage rooms, no one was at the front desk, and I couldn't find anyone. I finally knocked on the big door going back to the actual rooms and someone came out. Geesh.

They decided to push a medication that slows down the heart, and that worked for a minute then it shot back up. They then decided to prep him for electric shock to get the heart back into rhythm. That required them to sedate him. They also weren't quite sure where to put the pads that shock him since they didn't want to put them on his newly opened sternum. When they got it all figured out and were ready to start the sedation and shock, the five people in the room all looked at the monitor and said "um, Dr. Bringhurst! " ( not exactly what you want to hear when you can not see the monitor.) turns out that right before they were going to shock him his heart miraculously went back to a normal rhythm. Ha.

So, no shock, and they sent him home with orders to see a cardiologist. Needless to say we didn't get sleep for the rest of the night, for fear that it would happen again.

It hasn't happened again, and we now know that even in A-Fib, we have time to go to IMED. We are still waiting to hear back from the surgeon to see what he thinks is happening.

Anyway, that is the excitement for now. Boring would be good.

I apologize if you have been checking in every day. I have been a slacker.

Brent is doing remarkably well! It really is miraculous. He is still tired, but that is partially due to the IV Benadryl that he has to have twice a day before the IV antibiotic. He usually gets a nap after the Benadryl. :) I just checked his labs from today and they all look great.

Today we went up South Fork canyon and had a picnic. It was great to get out and just sit and watch the kids dogpile on michelle. :)

We are still amazed at how well he is doing so soon. We count our blessings, and are still very aware of how critical his situation truly was. There is no doubt in our minds that had we not gone in for his cough, and the heart valve regurgitation detected, that this story would have ended quite differently. Our hearts are full of gratitude.

Today is Memorial Day. We have many people that have gone before us that we miss terribly. Brent and I have both lost both of our parents, and I also lost my sister and a nephew. We have several cherished friends that we also miss today. We had great memories as we visited graves. Brent received a blessing before going into the hospital, and in it, those who have passed on were mentioned. I can honestly say that I have felt the influence of them throughout this ordeal. I picture some of them (Leland and our surrogate Grandpa Bruce Clark) giving em heck up there and pleading for Brent to be healed. We know that there are many who are on our team, and we love you.

So, Brent says I was a little harsh with the whole visiting and being sick warning. He says now nobody will come visit because they are afraid of me. Well, I am pretty scary.

So, yes, you can visit, and no, I won't run throat cultures or blood tests on you when you knock on the door.

So far so good at home. Just have to get into a routine.

Well, Brent had a pretty bad night last night because they gave him a medication that he didn't want and sure enough, it made him sick. Sometimes I wish they would listen to him. He knows his body and how he reacts to certain things.

So, imagine my surprise when I get a text saying they are releasing him today! Say what? Wow!
It's only been five days since surgery! Holy cow!

I am feeling a bit apprehensive since I know nothing about the heart. I know what to look for with all of his gut surgeries, but the heart frightens me. I'm thankful that Michelle doesn't work until Friday. She knows cardiac stuff. She did her capstone/preceptor in cardiology. Phew. At least we will be able to let Brent sleep at home. He hasn't slept much here. I think that will make a world of difference.

AND, here is where I go all Momma Bear on you . . .

If you want to visit with Brent, please call or text me first. 801-372-8467. If you have even a hint of a cold or anything else, or have been around illness of any kind, please stay away. Brent has no immune system, and this dandy little infection almost killed him. I know you all love him, but if you even have a tickle in your throat, please love him from afar, like an email or something. Thanks.

We have once again witnessed several miracles. We acknowledge them with deep humility. One of his friends texted, saying he is beginning to think Brent is immortal. Oh, he's quite mortal, just extremely blessed. Well, time to put my nursing hat back on . . .

Today has been an ok day. A few frustrations, but he is still showing progress. Today Brent had a PICC line put in, and the central lines in his neck finally came out. They are quite uncomfortable. The PICC line will stay in for a few months until they are totally sure any sign of infection is gone. Then they will feel safe enough to put in another Hickman tunnel IV. A PICC line is more of a pain because it is in his arm, and also he has to go to IV therapy at UVRMC to have the dressing changes done. With the Hickman we are able to do it at home. We are glad they are being so careful, though, and not inserting the Hickman before it is safe.

The infectious disease dr that came in today said that the line most likely did not cause the heart infection, but visa versa. Somehow he got an infection that spread to his heart valve, and then caused the line infection. He thinks the heart valve infection had been brewing for awhile. Everyone that sees the picture of the infected valve is amazed. Mostly amazed that he is still alive. I sure do love my miracle husband. :)

Hopefully tomorrow he will be able to have his chest tube taken out. Just one more step closer to coming home.

Brent is doing really well. The surgeon is pleased with his recovery so far, and all of his nurses and rehab people say he is way farther than most other patients only two days out of surgery. He is walking around the unit and his pain is manageable. One nurse today seemed so shocked that his surgery was only two days ago, and I just smiled, knowing that he is doing so well because of the faith and well wishes of all of you. Thanks.

Today was a good day! Brent lost three tubes, which s a good thing. The less foreign objects going into his body, the better. And, they moved him from the ICU after only 24 hours! That never happens with Brent. But the funnest part of it all was to watch him WALK out of the ICU, to the elevator, and to his new room. Say what?!?

We feel like so many miracles have occurred this week. Is there a limit to the number of miracles one person can receive? I sure hope not. For some unknown reason Brent is still with us, and we are very grateful.

I just spoke with Brent's nurse and she assured me that he was doing well, and resting with his noise canceling headphones on, undoubtably listening to the Mo Tab. I awoke in a panic so had to call. It was good to get about 6 hrs of sleep.

Can I just take a moment and focus on a few tender mercies in all of this turmoil?

First and fore most, we will forever be in Dr. Carn's debt. If he had not listened to Brent's heart when we went in for a persistent cough, the story could be tragically different. He is the one that detected the abnormality that inspired the Echocardiagram which detected the infection. We have been told by the surgeon and team of Drs that this most likely would have been fatal had it gone undetected. He quite literally saved Brent's life. Trying to think of an appropriate way to show our gratitude.

Second, the blessing of being in the right place at the right time, meeting a very skilled and kind thoracic surgeon at IMED named Dr. Caine. After an agonizing six hours he informed us that this was by far the worse infection he has ever seen. He even took a picture of it on his iphone,( which Michelle excitedly asked if he would send it to her. always the nurse. )It was not what they had anticipated going in. I very much appreciated his kind and sensitive nature and how he was so thorough in answering every question in a manner that we understood. He is always smiling and he sets my whole being at peace. Dennis, Brent's brother, trained under Dr. Caine's father at the U of U many years ago and remembers his father to be the same way. Grateful for skilled AND kind and compassionate people.

Third, the many people that we call our support team. You. It is made up of so many people that span the globe, either in our own home, next door, around the corner, across the country, or across the ocean. We have the most amazing family and friends that pull us through each time a crisis arises, which, unfortunately, has been all too often. We have family and friends of various religious beliefs, and perhaps with no religious beliefs, but we feel strength from each of you. We choose to make our private life very public during these times because your strength is what we survive on. We are nothing alone. I can't imagine anyone going through what we have to go through each day, and doing it alone. We suck all of the well wishes, positive energy, prayers, kindnesses, and hugs right out of you. And for this, we are ever thankful. We rely on your faith and your love and your physical, emotional and spiritual strength when we can no longer find it in ourselves. To you we say Thank You, even though we know that saying it does not even become close to expressing what we truly feel.

Brent has a long road of recovery ahead of him. We have yet to discover the extent of the infection. Dr. Caine tried to fix all of the damaged areas in the heart, and we can only hope that the blessings of modern medicine will take over and obliterate the remaining infection. (Pretty big words for 4:00 a.m.)

I would be ungrateful if I did not praise my four children. We could not ask for better children. They each deal with the stress of it all in different ways. We appreciate each of them. Sometimes you want to strangle them and sometimes you stand back and in total admiration and amazement exclaim, "that's my kid!" Thank you Joseph, Michelle, Kristina, and David for being who you are and for keeping your parents in line. :)

For those always in our corner, dropping everything to be here, feeding my family, and serving us in  so many ways, you know who you are, and you know how much we love you.

I will stop rambling now, but just wanted to unload some thoughts.

Lisa

6:30 update

Michelle here: Breathing tube is out! He's awake and talking to us. He has a chest tube in to help drain any extra blood from around the heart. He gets to eat ice chips at eight thirty!

Thanks for all the prayers and support.

Brent is out of surgery and in the cardiac ICU. He is still intubated, waiting for him to wake up enough to breathe on his own.

Dr. Caine said that he is doing well post-op.

The surgery took much longer than expected because when the surgeon got into the heart they found that the infection was much worse than they had thought. The mass was actually twice as large and the damage to his heart was much more severe.

Brent has a long recovery ahead of him, and a huge fight to fight this infection. We know he is a fighter, and that The Lord keeps him here for a reason. We are confidant that he will beat this. Please pray for his body to fight the infection. Pray for him to have the strength to keep fighting.

Thanks

O.R. Called to say that Brent is now on the heart/lung machine and they are now working on the valve. Kind of freaky to think about.

They took Brent back a while ago, and the surgeon came out to reassure us. They should be starting soon. It was a sleepless night, as they moved us to the cardiology tower at 10:30 pm to prepare him for surgery. There is a lot more to do for open heart surgery than there is for all of his other surgeries. Anyway, here's hoping for a quiet, smooth surgery with no surprises. Thank you for the millionth time for your thought and prayers.

Not the post I was hoping for...

Well, this didn't go as we had hoped. Apparently the valve in Brent's heart has sustained more damage from the infection than we had previously thought. We initially thought that he would be on IV antibiotics for six to eight weeks and that would be it. The infection on the aortic valve is too large and the Drs are worried it will dislodge and that could be fatal. The infection has also caused damage to the valve and it is not functioning properly. Therefore, Brent will undergo open heart surgery first thing in the morning to replace the valve completely. It is too risky to wait.

Needless to say this is not what we expected. We are quite scared. This is a whole new ball game for us. Tell us you are going to open up his belly . . . We have encountered and survived every possible complication from that . . . This is new and frightening.

Please send your thoughts and prayers to whomever or whatever you believe in for Brent. We do feel calm and peace about the decision to go forward with the surgery. However, there is that fear of the unknown. Thank you for your love and support. We appreciate it. I will post as needed to keep everyone updated. Thank you again. We go forward with faith once again.

Lisa

Well, this is something new.

Well, it's been a couple of months since I updated, which is awesome. Brent has been doing really well, and even had the strength and energy to finish the basement remodel due to flooding. We finished(except for a few things like window sill, the hallway flooring and moving all the crap back in) right on time. Which leads me to the bad news . . .

Last week he started running fevers and on Thursday we had his IV line cultured with the suspicion that it was somehow infected. He also has had an annoying cough that we attributed to allergy season and the fact that our huge tree out front is in full bloom. Well, the line tested positive for staph. Yippee. Luckily we can do IV antibiotics at home, and we have a great team of Dr.s who have confidence in us. Meanwhile we went to our primary care Dr for the cough and while listening to his heart noticed something of concern. He has always had an innocent heart murmur. He thought he detected an aortic regurgitation. So, the chest X-ray for the cough was clean, but today he had an echocardiogram and they found infection in his heart valve, most likely spread from the infected IV lines. Sooooo, they wanted to admit him right then to UVRMC, and we said "um, nope." We didn't say it was because we dislike UVRMC, and the care they give, but instead said that we needed to go to IMED in Murray because that is where his team of Drs and nutritionists are, which is true. So, after a blessing from our Bishop and Bro. Campbell (thanks), we headed up to IMED. They want to remove his IV line and monitor him for awhile (not sure how long awhile is, days?) and they will keep testing for staph and if he shows no growth they will put a new line in. Hopefully the IV antibiotics will clear up the infection in the heart valve, otherwise they will have to do a heart valve replacement. That is not sounding fun.

Soooo, here we sit. Waiting.

We are thankful for Dr. Carn and his good call on the heart sounds. Could possibly have led to something quite serious, like a stroke, if left untreated.

We are thankful for our amazing kids who are so responsible and I don't have to worry about them while I am at the hospital with Brent. I am thankful that the girls are living at home right now so david has someone to keep him company, even though I know joseph would stay with him if needed. We are thankful for our caring team of Drs, specifically our PA who handles all of Brent's nutrition, and was instrumental in getting him admitted at IMED without having to go through the ER. We are thankful for our ever supportive family, neighbors and friends. Some people think that I am a bit too public with things, but everyone deals with things differently. Personally, I need the strength and support of others. If I didn't have it I wouldn't be able to handle all of the stress. Thanks.

Here's to modern medicine, and prayers that it works.

Lisa

Brent quoting Tevye from Fiddler on the Roof: "Sometimes I think, when it gets too quiet up there, You say to Yourself, "What kind of mischief can I play on My friend Tevye?"" (insert 'Brent' in place of Tevye)

Not updating for a couple of months leaves much to be said. Here is a synopsis of events:

January: Brent is doing great! Back to work, busy, working in shop, building, carving, fixing things.
             Lisa is working at BYU Bookstore helping with online book orders for the new semester.
             Kids still going here, there, and everywhere. Michelle moved back home and started her new job as a nurse in Neuro Science Trauma at Primary Children's Medical Center in Salt Lake City.

February: Brent has excruciating pain in shoulder blade, upper back. Dr says trapezeous muscle, prescribes muscle relaxants. They don't help, gets worse, goes to Physical Therapy, Dr says rib out of place pushing on trapezeous muscle causing spasms, cranks on it for a few weeks, starts to feel better.

Smell a nasty smell coming from basement. Can't find source of smell. Find source of smell . . . a sopping wet pillow on Michelle's floor . . . further investigation leads to two flooded rooms. yippee! Rented a storage unit, put out a text for help, wonderful neighbors show up, empty Michelle's room and family room, rip up carpet (no tears shed about that, it was 25 yrs old.), rip out sheet rock, discover water leak coming from Michelle's window. Too much snow, followed by a week of rain with still frozen ground, and an improperly installed window, led to the flooding. Rip out more damaged sheet rock/insulation. find termite damage. Sit down and cry. Call friend, confirms termite damage, rips out more sheet rock in walls and ceiling, confirms my suspicion of old termite damage, not any live action. Phew. We had termites 20 yrs ago and were treated for several yrs. Need to replace several 2x4's and header. Continue to totally gut Michelle's room, now down to concrete and studs. Dig out window well and put in gravel. Figure we might as well do the long-planned remodel on the family room while it is already half torn apart. Rip out ugly panelling, tear down faux top of fireplace (bricks weren't even secured . . . just sitting there waiting to fall on someones head). Now the rebuilding begins. Woo-hoo! Thankful for good friends who are talented in carpentry and sheet rock and windows. Oh, forgot the fun trip to the dump which got us two flat tires on the trailer. I applied for a job I thought I would be great at, didn't get it.

March: Oh, and right after the funky smell was detected in the basement, and we got everything moved, Brent lost the use of his left leg due to severe pain shooting down it. Thought it was sciatica nerve pain, got worse, went to Dr, said no sciatica, inflammation behind the knee, prescribed high steroids, didn't help, got worse, bought crutches, called Dr, had MRI, shows bulging discs, has steroid epidural, can walk now! Yay! Drove himself to work yesterday.

I am sure I forgot lots of other fun stuff, probably a good thing. When it rains, it pours, apparently into our basement. Ha. 

Throughout it all, we sometimes cry (lots) and sometimes laugh because that's about all we can do. We sometimes feel picked on, and other times feel blessed. We sometimes whine and complain and sometimes thank the Lord. We sometimes go to bed exhausted physically and emotionally, and sometimes sit on our butts and drink a well deserved Diet Pepsi or Dr. Pepper. We always, ALWAYS remember our family and friends and count our blessings for you.

Let the journey continue . . .

Lisa

Today, January 12, is the date eight years ago, that we came very close to losing Brent. This was the 1st of many times that his life would be on the edge, but definitely the worst of them all. I could share all sorts of thoughts about that day, but I won't.

Instead, I will rejoice in the fact that it's been a pretty normal day. He went to church, taught a Sunday School lesson (ironically on the foreordination of man and the Plan of Salvation), cooked a roast for dinner, watched the Broncos win, and relaxed. Yesterday we went to the temple together for the first time in a very long time, and also went out to eat. We visited with Dennis and Jan and Angela the other night at a funeral viewing for Jan's moms husband, and Dennis made the comment that Brent was actually 'pink' not pasty gray. :)

Thanks for fighting, Brent, and staying here with us. Thanks for enduring all you have endured in the past eight years. Thanks for showing us some of the old Brent that we love and have missed.


In other news, Michelle started her job last Monday at Primary Children's Medical Center in Salt Lake, in the Neuro-Science Trauma Unit. We are glad to have her home for a little while and out of the boonies in Vernal. :) 

It's a new year, and along with it, a new way of life for us in the Moore home.

If you remember, one year ago, Brent was in the ICU at IMED with a hematocrit of 16, which is critical. Normal range for iron levels is 40+. That started a year of many questions and few answers. He ended up receiving approximately 30 units of blood, numerous iron infusions and a new drug costing $13,000 a shot which he gets every 8 weeks. He has not had to have any blood transfusions since August. His hematocrit went up and down all year long, with a slight upward trend. Right now he is receiving iron infusions every 2 weeks, and the Stelara every 8 weeks. Something is obviously working to his benefit, because as of 3 weeks ago, his crit was at 37! That was a miracle in and of itself.

With the increase in his blood levels, Brent has energy again. It is weird. It is very weird. The kids and I don't really know what to think. For so long, he has had no energy whatsoever. We were discussing the fact that David was 8 when Brent first got really sick in January of 2006. David is now 17. For half of his life, his Dad has been really sick, barely clinging to life in some instances. The atmosphere in our home has been kind of quiet and somber, because Brent is usually asleep or too sick to handle lots of noise and people. We have become accustomed to being quiet, waiting on him, and always, ALWAYS vacating the recliner if he comes into the living room. We became used to his moods of anger and frustration, and tried to not take things personally.

Fast forward to now, January 1, 2014. Brent is at a movie with Tina and David. I am home alone (I quite enjoy that) and last Saturday he and I attended a Mannheim Steamroller concert in Salt Lake. When the kids were all home over Christmas, he came into the living room and whoever was in his chair immediately got up and moved. He said "Geez, you guys don't have to vacate every time I walk into the room." We are just so used to things being that way. He is joking with the kids, and we see the old Brent peeking through.

I am not complaining, by any means. We are extremely thankful for the the many blessings and miracles that have occurred in our lives over the past 8 years. Just as we all had to change and conform to our new way of life 8 years ago, we have to change and conform back to some semblance of normalcy again. It is not easy. It has been a very long and difficult time for us, and we grew and changed permanently in many ways. We will not ever be who we once were. We have been through too much for us to ever be the same. We are stronger, better, braver, and much more humble and grateful.

I find myself kind of lost. I have put my entire being into taking care of Brent for so long that I don't know what to do with myself, or what I even want to do with myself. It is such a foreign feeling. I am on a quest to figure out what I want to be when I grow up. :)

The kids are the same way, not knowing what to think about having some of their old Dad back. It is awesome. We have truly been blessed. When we look back at what Brent has fought through and survived over the past 8 years, it really is a miracle that he is still with us. I would have given up many times, but he kept fighting against all odds, amazing his team of doctors, nutritionists, and surgeon.

We are not stupid enough to think that this is the end. We have been here before, and know that his condition changes in seconds. We know that he will never be truly healthy ever again, but we are thankful for how healthy he is right now. We will take each amazing good day as it comes and make the best of it. We will continue to watch with amazement as Brent works in his wood shop, builds things again, carves things again, does the dishes and laundry while I am at work, goes to work each day to an amazing job with the best people ever, eats normal food, and goes to movies and concerts.

We started 2013 in the ICU, and ended 2013 happily at home. We are ready for whatever 2014 has to offer, good or bad. It almost feels like some sense of achievement. We made it. We survived another crazy year. We are back.