Well, there's not a whole lot going on. We just got home from wound care at UVRMC. That is Brent's only outing, every other day. They change the dressing on the wound vac, which is on the midline incision with the fistula. The incision is healing really nicely. Not much left to close up. Not sure what happens with the fistula when it heals to that point. It's quite ironic to me that we are so excited that things are healing . . . only to have to go back in in about 6 weeks. Crazy.

Brent's days are spent mostly in bed, or out on the couch. Not much to do. He's a bit stir crazy. We spend the day emptying drains, doing dressing changes on the small incision and the drains, making sure he has enough pebbled ice to chew on, but not swallow, and trying to think of ways to spend the time. Movies, games on the ipad, music . . . that's about it. The kids are usually highly entertaining, or frustrating, depending on the day.

If you would like to visit, please call or text beforehand. He is often asleep. If you have any signs of illness, no matter how small, we ask that you just stay home and email or text him. He has no immune system, and catching ANYTHING could be very detrimental to the healing process. Thanks. (trying not to be mean, but protective at the same time. That's my job, I think.)

Have a great New Year. Thanks for your continued support, encouragement, strength, love and prayers.

lisa

Well, so far so good, here at home. We are excited to be able to spend Christmas together as a family. All of the presents won't mean as much as just having Brent home. Once again, we are so thankful for the Dr.'s that made it possible for him to come home. We are thankful for the strength and support given to us by you. May you all have a very Merry Christmas.

Our Christmas Miracle. :)

Well, after keeping a secret for 4 days, I was able to bring Brent home! On Thursday, Dr.Price said that he was going to try to figure out a way to get him home for Christmas. They experimented with taking him off of the suction on the two drains, and hooked them up to JP suction bulbs instead. They put a wound vac back on the midline incision with the fistula, which they don't like to do, but so far it is working fine. He was taken off of the IV pain pump as well, and switched to some yummy "lollipops." :) So, today, after waiting 6 hours, they finally discharged him tonight at about 5:00. We made sure he had pain meds on board for the adventurous drive home through all the construction and rush hour. I am happy to say that he is home, sitting next to me on the couch.

Dr. Price figured that he can recover 6-8 weeks at home, instead of at the hospital if at all possible. We thank him for trying and for his love and care. We are glad to have him home.

We are very scared though too. He has to guard the Malecott drain with his life (Dr.'s orders). If anything happened to it, we would be in BIG trouble real fast. This is the drain that goes directly into his intestine. It is very painful.

I have donned my nurse's cap again, and am ready to take over. My new duties include wound care, drain emptying, chauffeur back and forth to wound care for the wound vac, and whatever he needs. I am just glad to not have to drive to the hospital everyday. :) Luckily, we can go to wound care at UVRMC, and not have to drive up to Murray for it. Nurse Michelle is home for a few more weeks too, so she can get some practical experience in while she's home. :)

In 6-8 weeks, he will have to have another surgery. We do not know yet if that will be here in Utah, or at UCLA. We won't know until then, and honestly, I can't even think about the logistics of having to go to UCLA. It frightens me.

We have felt your love and support in the form of prayers, meals, kind words, hugs, blessings, visits, texts, phone calls, cards in the mail, and offers of help. We appreciate our family, friends, and coworkers more than you will ever know. Your love and faith is what sustains us.

Brent is not out of the woods, and up and around, but he is home. Happy Birthday to David, and Merry Christmas to us! :) May you be blessed with the desires of your heart, also, at this Christmas time. We are thankful for this season of love and giving. We are thankful for our Savior, and for his birth, life, and resurrection. We acknowledge and are thankful for our blessings, which includes you.

lisa

Well, I haven't felt like posting since yesterday because I feel as though everything I post is negative in content. I feel as though I am always sharing bad news.

Yesterday Dr. Price told us that we should expect Brent to be in the hospital for another 6 to 8 weeks. At that point another surgery will be scheduled to repair/remove the fistula, and remove the drains. This surgery will either happen at IMED, where he is, or at UCLA. If more intestine needs to be removed, then Dr. Price would rather it be done at UCLA, because they are better trained at precise surgery and would be able to save as much as possible.

the reason for the wait is reminiscent of 5 years ago, when he sat in UVRMC for 45 days "waiting." If Dr. Price were to go in again right now, after already going in twice, he would make a bigger mess instead of fix anything. The tissue is too soft and inflamed, and there is too much leakage and infection going on. So, ironically, he has to heal before they can do more damage. :) Crazy, huh?

We are currently trying to figure out things to do, or ways to keep from going stir crazy day after day at the hospital. I'm going to try to get Brent out of the room more often, off the floor, maybe outside, I don't know.

I'm finding it very difficult to resolve the guilt I feel at not being at home when I am at the hospital, with the guilt I feel for not being at the hospital when I am at home. Aye-yi-yi.

We know that we can get through this again, simply because we've been through it before. Do we want to? No. Do we have a choice? No. We know that we have your prayers and support, and we know that we can count on you no matter what. Thank you.

lisa

Not really anything new to report. Brent is still just waiting for things to happen. He has three drains hooked up to suction, which makes it pretty much impossible to get out of bed and walk. Dr. Price is still watching what the drains are doing and hoping the malecot (the one in his intestine) starts producing more results. The fistula in the incision isn't producing a whole lot but is a pain, and the whole reason he cant go walking.

My mom has been here for A couple of weeks but goes back to Iowa on Monday. It has been good to have her here to help out at home. Michelle is home for a month for christmas break. Tina will be home on wednesday.

Everyone asks when brent will get out. There is no date of release set. There is no definite plan of action right now. Dr price is waiting to hear back from some other dr.'s. As long as he is hooked up to all of the suction he cannot come home. :(

Thanks for the continued thoughts and prayers.

Lisa

Ok, so we should have been content with status quo. Dang it. Brent had a fistula pop through the midline incision this afternoon. Not sure what happens next. Its just a little too reminiscent of 5-6 years ago.

No real changes. Just waiting for the drains to do what Dr. Price wants them to do. Waiting, status quo, is very boring and frustrating.

sorry I haven't updated for a few days. Not a whole lot to report. It is just a long, boring waiting game now. Dr. Price is happy with the progress of the two drains. The CT scan looked good the other day. The incisions are both healing with the aid of a wound vac. Still NPO (nothing by mouth). Brent has been up walking, and walked quite a bit yesterday. It's a pain for him to get up because everything has to be disconnected, especially the big drain that is hooked up to suction on the wall, but I'm proud of him for making the effort. He's always the strong one, willing to fight.

Michelle came home for a few days before finals start. We took Grandma to Festival of Trees in Salt Lake City yesterday, and she was amazed.

Today is Fast Sunday in our church. I know that many of you will include Brent in your fast, and we greatly appreciate that. There is still no release date in sight.

Have a good day.

Lisa

Brent had a better day today. I wasn't there for very long today, but he was doing much better. The CT scan report was good, and Dr. Price is happy that the tube & drain are pretty much doing what he wants them to. Sometimes you just gotta have a "me" day and tell all the therapists and nurses to go jump. Dr. Price agreed. :) Here's hoping for more good days.

My Mom flew in yesterday, well, actually this morning, to help out at home. Her flight was supposed to arrive at 3:20 yesterday afternoon, and actually arrived at 2:15 this morning. American Airlines, I have decided, is definitely on the 'naughty list' this Christmas season. Ugh. She spent 12 hours in Chicago O'Hare. Not good. We are just glad she made it safe and sound. Thanks to Brenda for picking her up at the airport and letting her sleep at her house! I was so tired yesterday there is no way I could have driven up there at one in the morning.

I apologize to those that I have been grumpy with. There are probably several of you. Stress does bad things to ones spirit. Some days I just feel as if my reservoir is completely dried up. Then, miraculously, other days, it is refilled, either by a kind word, an awesome hot meal delivered, a hug, prayers answered, or just plain sleep. Please don't judge me too harshly. Some days are just better than others. Some days we can cope, and some days we can't, and that's ok. Some days we waver in our faith, and question "why?", and other days, we accept our trials for what they are.

We love you, and always give thanks for you and your love and concern for us.

lisa

Brents not having a good day today. He's just plain had it. Had it with the constant flow of people coming in and out and doing various things to his tired body. He's tired of no progress and no answers. Tired of being at the mercy of nurses and doctors. Tired of missing work. Tired of just everything. Please pray for him and pray for his emotional health as well as a few miracles in the physical health area too. He is having wound care done, and then he will have a CT done. Hopefully it will provide some positive answers.

I guess i have pretty much had it too. I'm tired.

Lisa

Brent was moved out of ICU today and into a bright cheery room. I'm so glad to have him out of ICU. The care there was less than satisfactory. He still has a long haul ahead of him, and no known date of discharge yet. Thanks Brenda and Dennis for your constant vigil in the ICU, for keeping me company, driving me home, etc...

Lisa

oh, if you want to visit, please text or call me first, and I'll let you know if it's a good time. Thanks. I don't want anyone to drive all the way up there for nothing. :)

801-372-8467

Thank you

Yesterday our dear friends organized a special fast for Brent. I greatly appreciate that. I could feel your love and strength, and know that Brent could also. He improved a bit throughout the day, and had a fairly good night. He woke me up this morning at 6:30 to let me know his phone was dying. :)

I just found out from Brenda that they are moving him out of ICU sometime today. That is great news, as we have been less than satisfied with his care in ICU. A letter will be arriving on the Directors desk from me, that's for sure. I could have given him better care at home than he got in the ICU, and I don't charge nearly as much.

I just really want to thank everyone for their love and care. Everyone is asking what they can do to help. Honestly, I don't know. It's just David and I at home, and Joseph can help with David when I can't be there at night. My Mom may be coming out, not sure yet. Just keep sending the good thoughts and prayers. We are physically and emotionally exhausted, but there's not really much you can do to help with that. David loves food, so if you feel so inclined to feed him, I'm sure he would appreciate it. :) He's probably getting tired of turkey leftovers.

Thank you again.
Lisa

Brent had a rough night and isn't doing much better today. Still in ICU, so no visitors please. Thanks.

Leaving Brent at the hospital, especially when he is in the ICU, is the most difficult thing for me to do. I guess I have this unrealistic thought that if I am there with him, nothing will go wrong. It was very difficult to leave him tonight. The ICU kicks you out from 7-8:30 (a.m. and p.m.) for shift changes. Dr. Price made me promise that I would come home and sleep in my own bed tonight. After having not slept for 2 days, Dennis (Brent's brother who flew up from St.George), drove me home.

So, here I sit, worrying like crazy and wondering if he is ok. All sorts of stupid thoughts go through your mind. I will call soon just to make sure he is ok. When I left he had a pretty high fever. He is fighting a lot of infection. We didn't know the extent of his infections until after surgery. He was pretty messed up inside.

It was amazing to come home to a clean house and a hot meal. Going to sleep now. Thank you for your prayers, thoughts, good deeds, love and concern. May you be blessed for your efforts.

Lisa

Update

Dad is doing pretty well, all of his vital signs are stable and look good. He's been sleeping. We are not allowed to use cell phones in ICU rooms, so please watch the blog for updates or call the house to talk to someone. Hopefully mom will be able to get some rest tonight, as she didn't sleep last night at all.

Thanks for all the support and prayers.

~Michelle

Surgery

Brent just got out of surgery. He is in the icu but we hear he is doing well, haven't seen him yet. He's in the icu just to be closely watched. The doctor cleaned out a bunch of infection and inserted a tube into the hole in the intestine. The tube will drain to a bag on the surface and form a fistula that we want. eventually the doctor will seal the tube off and let it heal. He has a drain next to the tube in case it leaks around the hole. He closed the incision on the front of his abdomen a little because the doctor doesn't want a wound vac on it sucking from the side and undoing what he just did.
Thanks for all the support and prayers.
(Michelle)

Back to the O.R.

Well, Brent has not had a good couple of days. Yesterday he was tripped out on some drugs, and ran high fevers. He was fine when I left the hospital at 8p.m. But then I got a phone call saying things had gone south. His drain was discharging large amounts of bowel content. Got back in the car and drove back to the hospital. Waited forever for the CT scan and waited even longer for the results. Needless to say, Brent is back in surgery right now. Dr.Price says there is a huge pocket in his abdomen that has to be drained. He has another hole in his intestine that has to be repaired and possibly another fistula. So, we are back to square one again. Somedays I wonder when enough is enough. He has had it, and his poor body is tired. I wonder when you decide it's time to risk the transplant. I'm running on no sleep and my brain is fried. Please pray for Brent.
Lisa

A Day of Thanksgiving

Today, being Thanksgiving, I give thanks for so many things. Brent is doing as well as can be expected only 2 days out of surgery. He's been up walking, and is awake most of the time. They have him so heavily drugged that he tends to nod off unexpectedly. :) But, drugs are good when you are in so much pain. He has two incisions to deal with, not just one, which makes things a little more complicated. He is still NPO, but they said maybe tomorrow he can start on clear liquids. He always amazes me with his strength and will to survive. I think I would have given up long ago had I been made to endure what he has.

Tomorrow will be the first dressing change since putting the wound vac on, so it will be interesting to see how much healing has taken place so far. We are hoping that he won't have to come home with the wound vac on. But, if he does, it's not like we don't know what to do with it.

I am thankful for my four awesome kids. Thankful that they are wise and compassionate and capable of doing many things. Thankful that I can be at the hospital and know that I don't need to worry about them. Well, sometimes they try to kill each other, but so far, so good.

I am thankful for all of our family, spread throughout the country, from the east coast to the west coast. The support and strength that you offer us is immeasurable (is that a word?), and so very much appreciated in whatever form you offer it. We truly know the meaning of "family." We couldn't do this without all of you. Thank you. Again.

I am thankful for the friends and neighbors that have touched our lives throughout the years. You are amazing. We can never repay you for your kindnesses and prayers and support. We love where we live, and hope to never have to leave.

I am especially thankful for our doctors and nurses that always go the thousandth mile for us. Dr. Hemmert has been our Dr. for 27 years, and we cannot even count the number of times he has saved us with his expertise, research, inspiration, and love. He is threatening to retire soon, and we are so thankful for the years he has given to us. No other Dr. will be able to replace him. Ever. And what, exactly, do you say about his MA, Becky? Not only does she know each of our birthdates, soc. sec. #'s, meds, has our phone #'s on speed dial, but she has become our very dear friend also. She fights our fights for us with the insurance company, the hospitals, other doctors . . . you get the picture. Dr. Price has saved Brent's life, literally, more than once. His heart is bigger than his ego, and he truly cares about mankind. We are thankful for his surgical skills, his inspiration, and his love. His nurse, Teddett can make miracles happen too. Suffice it to say that we are thankful for modern medicine.

Our lives are richly blessed. We have had more than our share of trials, and frankly I'm tired of being told I should be thankful for my trials . . . but I am thankful for the growth and strength that we have gained from our trials. Would we have chosen them? Probably not. Do we feel picked on? Many times, yes. Do we doubt our Heavenly Father's love for us? Never. Bad things happen to good people all the time. We are reminded of One who has endured much much more than we can ever imagine. He, too, loves us and watches over us. We just keep trying to endure what we've been given, and endure it well. In the end, that's all that matters. We have to make the best of what we've been given.

As always, we are thankful for the many prayers, fasting, good thoughts, messages, and love that are sent our way. Thanks for sharing yet another journey with us and making the journey easier.

Happy Thanksgiving.

Love, Lisa

1st day post-op

Brent is doing pretty well today. After a night of no sleep, he managed to take 2 walks, and will take another one tonight. He seems to be in good spirits. Wound care came in today while I was there. Oh my gosh. That is one heck of an incision. I even looked and didn't pass out. :) Wound care put a wound vac on that connects to both incisions. Wound vacs are not fun, but do a great job of creating healthy tissue and promotes faster healing from the inside out.

Brent is so brave, and has such a positive attitude. I admire his strength.

We don't know how long he will have to stay in the hospital. Normal post-op time is about 5-7 days, but as we all know, we are far from normal.

I am sad that this stupid snow storm will prevent me from going up tonight or tomorrow until it stops. I hate the commute, but love the hospital and our surgeon. We are so thankful for Dr. Price and his expertise and care and concern. We truly love our doctors and nurses and MA's. :)

We are thankful for our awesome friends and neighbors. Nothing better than homemade chicken noodle soup on a blustery winter day. And, Danielle, those lemon bars were amazing! :)

Stay warm,
Lisa

P.S. This is what the kids do when reunited :) David's face is priceless.

well that was unexpected . . .

Well, I'm home and can finally update the blog. Not sure why the itouch wouldn't do it. oh well. So, long day/night. Went to the ER in Murray at 3:00 yesterday. Brent was in pain and running fevers and his blood work from yesterday morning was through the roof. Not good. Dr. Price wanted us to go to the ER up there because he was on call. Waited and waited and waited some more, then finally got in a room. Had a CT scan at about 8:00, and it showed pockets of air and bowel content in the muscle wall. Dr. Price took Brent into surgery at about 10:00, hoping to be able to go in through the incision in his side that is still open. Unfortunately, that did not work. He had to make a normal incision down the belly again. He found another fistula, which he removed, and also found a hole in his intestine, causing the leakage, and subsequently all of the infection and abscesses. He closed up the hole, and promised me he stitched it many times, glued it, prayed over it, and pulled healthy intestine over it to seal it off. (healthy intestine is relative when talking about Brent). So, now he has 2 open incisions to heal, but we lost no intestine, which is very good, as he does not have any to loose. I'm sure I'm missing a whole bunch of medical stuff to report, but I'm so tired I can't think straight. Gotta go to a funeral, pack some stuff, get it up to brent, and get back home before the storm of the century hits at about 3. I hope and pray Michelle makes it home in time before the storm.

Thanks once again for all the concern and prayers. Have a good Thanksgiving.
Lisa

Thanksgiving

This blog is usually Lisa's domain and I am always as interested as anybody else to see what she is going to write - even if I'm the subject matter of her posts:) But every once in a while I get to add my $.02 worth.

This is the time of year when we pause and give thanks for all that we have been given. I would be a very ungrateful person if I didn't acknowledge all the blessings I have been given in the past year. From friends willing to drop everything to come give me a blessing (and break a few traffic laws on the way - Tim) to neighbors that will teach my Gospel Doctrine lessons at a moment's notice when I have a bad day or two, to family that is always there to help when they can. I have an employer that has been very understanding over the years and insurance that while not perfect has been very good to work with. I have a group of medical professionals that truly care about me and my family and have gone above and beyond the call of duty so many times we have lost count. Hopefully I can get healthy enough soon that Dr Hemmert can finally get some sleep :)

I have a family that has been amazing through the ordeals we've had over the past few years. My brothers and sister have been wonderful with all the support they've given, especially in helping out Lisa and the kids in all they do. They've been able to remove many of the worries we have had in sending three children off to college at the same time. My children have had to grow up too fast and become self sufficient over the past few years. It is nice to have kids that are responsible enough that they can go on "auto pilot" and allow Lisa to concentrate on my needs for literally months at a time. They aren't perfect but they truly have been a blessing in our lives.

Most of all I'm thankful for Lisa. I'm pretty sure that twenty five years ago when she married that skinny little sick kid she never imagined what she was getting herself into. She has had to become the glue that holds our family together while dealing with medical situations that would make lesser people run away. She has had to become an expert at everything from dealing with hospitals and insurance companies to wound care. She spends much of her time driving me from one appointment to another or waiting for another test to be done. All the while she has sacrificed her own needs to be sure I had whatever I needed. She has dealt with some really gross medical issues and situations that she absolutely hates but does anyway because they are what needs to be done. She listens to my complaining and frustrations and shares my tears and sorrows. She has helped me keep my faith during dark times when it would seem easier to just give up. She truly is my rock and the love of my life. I wouldn't be here without her.

I would be truly be ungrateful if I didn't thank my Lord and Savior for all the miracles that have occurred and continue to occur in our lives. I understand very well that I shouldn't be here. Somebody asked me a little while ago if I ever felt like Job. I have to admit that sometimes it sure seems that way but after studying the story of Job more closely (teaching Gospel Doctrine has that benefit) I have been able to use his example as a model of patience and hope. I know that all suffering has a purpose and that we learn through our suffering lessons that we can have no other way. I also know that our Savior understands what I am going through because He took upon Himself not only our sins but our infirmities as well. I really don't want to ever go through these experiences again but I know that I have been changed in a way that could occur no other way.

As we approach the holiday season I hope you can take some time away from the crazy and spend some time in quiet contemplation of the season and the blessings we have been given.

Brent

Ugh.

So, today we had a follow-up with Dr. Price in Salt Lake City. Brent is smart enough to pre-medicate himself before our visits with Dr. Price. He has been known to do cruel and unusual things in his office, all the while forgetting that Brent is not on the operating table, completely unconscious, but is indeed, very awake. :)

Today was no exception. If you recall, last week, the other Dr. Price made a small incision in Brent's side to drain a strange abscess. All week it has been fine, and not really draining anything. Last night when I was changing the packing/dressing, apparently somehow another pocket was opened up. I'll spare you the gross details. You're welcome.

So, today, Dr. Price decided there was yet another pocket that needed to be drained (#3 if you're keeping count) and he made a rather large incision (about 3 times as large as the one already there). Poor Brent. I'm not looking forward to tonight's dressing change. Oh well. One of these days I 'm going to submit a bill for my services to our insurance company. I've seen what nurses get paid, and I could rake in a pretty hefty amount. I wish.

So, now what? Good question. Now we hope and pray that there are no more pockets, and that the nice big hole in his side heals up. Only time will tell.

Have a great Thanksgiving!

Lisa

time to catch up . . .

Ok, so, I've been negligent in keeping up to date with all the fun things going on around here.

Brent did have his "special" MRI last Thursday at UVRMC. Dr. Hemmert found a radiologist willing to do it. The MRI did show that there was a pocket forming just under the skin in the abdominal wall. We are fairly certain that all of this inflammation is due to the suture that has been removed. The report spoke of a tract underneath the pocket, but could not tell if it was communicating with the intestine. The theory is that it was made when they tried to do a needle aspiration.

The pocket continued to grow and become very painful. Our surgeon, big surprise, is out of the country, Cuba this time. So, yesterday we went up to SLC to see our surgeon's brother who practices with him. He lanced the pocket and drained it. Now I get to do wound care again. Woo-hoo! The pocket was fairly deep, so we just have to pack it with medicated gauze until it heals.

Sooo, now we just hope and pray that it was not communicating with the intestine and it just heals up and goes away. Brent already feels better, pain wise. It is a totally different pain now, that of an open wound.

That's all for now.

Well, still trying to figure out what's going on with the fevers and pain. (He hasn't had fevers for awhile, and pain isn't as severe). Brent's blood tests were not good this week. Changed one of the IV antibiotics today from Levoquin to Avelox, scheduled for a special kind of MRI next Thursday to see if the CT scans are missing something, and just for the heck of it, they are letting Brent eat again. :) So, no answers, but NPO drives him nuts so being able to eat something really helps.
That's all for now . . .
Lisa

Well, back to NPO (nothing by mouth), increase prednisone again, high fevers and lots of pain. Fun times.

Brent's blood levels are down today. That is so good! Not into the good ranges, but definitely heading in the right direction. Woo-hoo! Could we really be lucky(blessed) enough to have the suture be the real cause of all of this pain for the past few months? Here's hoping.

YES!

The procedure today was a success! The Dr. was able to get the suture out by using a scope. It was very large and gnarly, and it took him an hour to get it out, but, he DID get it out. Now we just have to wait and see if the inflammation goes down. We are so thankful that he was able to reach it. Thank you for your prayers and well wishes. Now it is a waiting game to hopefully watch the numbers come back down, and the pain to subside. He's sore and tired, but hopeful.
~lisa

Really? REally???

Ok, so here goes a feeble attempt to describe the last couple of weeks.

My friend said it right when she said, "so with every answer comes more questions." Yep. Usually.

The past month, Brent has either been NPO, or on a liquid diet, trying to get the inflammation to go down. CT scan showed large pocket of inflammation, and adherance of the sm. intestine to the abdominal wall. No abscesses or fistulas for which we are grateful for. Unfortunately, nothing has seemed to work to control the inflammation. He has been on 4 IV antibiotics/day, large doses of steroids (prednisone & entocort), and the numbers kept going up. This weekend he had a lot of pain and fevers, and blood work on Monday was through the roof. On Monday, he had a needle aspiration of the area under CT, and also cultures of the Hickman line. So far, all of those have come back negative.

Today, we went to the hospital and Dr. Hemmert did a colonoscopy and found a suture deep inside. Ironically, this suture is in the exact area that has been causing problems for months. He had suspisions that this suture is what is causing the whole inflammation problem. It is a silk suture which does not dissolve and needs to be cut out. We then went to have another CT so they could verify that yes, the suture is in the exact area that the inflammation is in.
Dr. Hemmert was not sure what to do at this point, as he wasn't sure if they could go in and get the suture with a scope.

We just got a phone call telling us that he is scheduled on Friday so that Dr. Dickinson can try to get the suture through scoping him. If that doesn't work, we are pretty sure the only other option is surgical, which we want to aviod at any cost. Our surgeon is probably booking a flight to anywhere foreign right now, since he knows what is going on.

Sooooo, here is hoping beyond words that this procedure is successful and that it will alleviate his pain and the inflammation will go away. On the bright side, the colonoscopy showed no active Crohn's which was very unexpected. All along, we all assumed that the inflammation was active Crohn's.

We are thankful to Dr. Hemmert and his inspiration to do a colonoscopy today.

We are praying for yet another miracle that this is a quick fix for a large problem.

Just thought I had better update, although there is really nothing to update. Still holding status quo. No food, lots of IV antibiotics (4 per day), lots of steroids, not much change. Life goes on.

The girls are coming home for the weekend. :)

That's all.

It's been awhile . . . that's a good thing, right?

Well, I know it's been a few months, but I figure that is a good thing. We count our blessings every day.

Can I just say that Crohn's Disease really sucks? It doesn't care about the people it attacks, or the timing of these attacks. It does not care that we have been enjoying these past few months when Brent could actually eat real food and enjoy it. It does not care that every time it decides to show it's ugly head the stress level in our home goes through the roof. It does not care that we really really want to do things and can't. It doesn't care that Brent has many new responsibilities at work right now, and doesn't have any sick or vacation days to spare. It simply is an uncaring, ugly, wicked disease.

Well, now that you know how I really feel about that . . .

Today Brent was put back on NPO. (nothing by mouth). This is a last ditch effort to get the Crohn's to hopefully quiet down, and avoid surgery. As you know, if he goes in for another surgery, there really isn't much left to take out. It's very risky and complicated. He has a spot (that same *!#? spot) that is inflamed and is attacking the abdominal wall. Not good. CT's so far do not show an abscess or any fistulas forming. That is a good thing. The Crohn's is not responding to the IV antibiotics or the Cimzia injections. That is not a good thing. We are running out of medicinal options. So, for now, he is back to not being able to eat anything at all. That is really hard. Try it sometime. His TPN will be increased to 7 nights again. Luckily we are capable and can administer the IV antibiotics, extra fluids, and TPN at home. If not, he would be in the hospital right now. That would suck, since our hospital is in Murray, and I lost all of my drivers in the house to take David wherever he needs to be. Oh well.

I think we should get t-shirts. You know, been there, done that, got the t-shirts? Ok, not so good with the humor.

So, if you feel so inclined, please send your prayers, good thoughts, whatever, this way . . . again. We do feel them and know that with your love and support we can get through anything. (it's that whole "been there, done that" thing again.) We tend to get a bit discouraged when we take those steps forward, and then get kicked back behind the goal line again. (just finished watching David play football).

Love,
Lisa

Our team: No Guts Moore Glory, May 15, 2010

looking back . . . and forward.

I sometimes wish that I had been able to blog about Brent's other surgeries. I just went back and re-read all of the posts since beginning this blog in Sept. Wow. It's a bit overwhelming. You tend to forget all of the gory details as time goes on. That's probably a good thing. Although, I have been reminded of how far he has come, and of all the wonderful friends, neighbors and family that we have who have supported us beyond measure over the past 4+ years since all this fun began. I tried once to write down my thoughts and feelings about his first 4 surgeries in 2006, when he should have died, but miraculously didn't. I couldn't do it. It's strange how you can go through such traumatic events and then forget those deep dark moments where you felt like you were all alone. Funny how you just keep going and doing the things you know you need to do even if you don't want to.

Now that Brent is doing well, and is back to work full time, and then some, I find myself wondering what the future will bring. I really need a part-time job if anyone has any connections. I've got to get out of the house before I go crazy. :) Now that I'm all grown up and graduated, I have no idea what I want to do. I know I want to do something that helps other people somehow. I can't see myself sitting behind a desk all day. Anyway . . .

Brent really IS doing well. Still on IV TPN four nights a week for his nutrition, but still eating REAL food too. His brother was here this weekend and was so excited to be able to take us out to eat and see Brent actually eat! :)

Looking ahead? Well, we really don't do much of that. We know that things can change in a heartbeat, as they so often have. We take each day for the blessing that it is. For all of the teasing and tickle fights and sarcasm that the kids get from their Dad, they know that they love it . . . and they know that he loves them.

Lisa

Well, our walk is tomorrow! Yay! It is supposed to be a perfect day weather-wise. It's not a grueling walk or anything. You'ld think with a bunch of Crohn's and Colitis patients they would have port-a-potty's every 10 yards, but they don't. Bad planning. Our walk is in the beautiful Sugarhouse Park. Last year they provided fun activities before the walk, and lots of yummy food.

So far our team, "No Guts, Moore Glory" is in 2nd place in the fundraising efforts. Yay team!!! Our yard sale helped a lot. Thanks to everyone who donated items, and everyone who has donated money and came and bought items at the yard sale. You are awesome. All of the money raised goes to helping to find a cure for Crohn's and Colitis, and also supports Camp Oasis, which is a camp for children that have Crohn's or Colitis. It's definitely a devistating disease.

Kristina has designed yet another awesome t-shirt for us. We will be sporting white t-shirts this year with our team name on the front, and the words, This Too Shall Pass, on the back. :) quite appropriate on many levels. The humorous aspect of course, but also the aspect of the many trials this disease has produced in our lives. The trials do pass, and we are always better people, and much stronger afterwards. Our family has grown and strengthened over the past 4+ years since the big surgery goof-up.

Brent is back to work full time again, and actually just got a promotion to Director of Edge Services at BYU. It's a group of computer engineers. Yay Brent! So far, so good. Every day is an adventure in our home. We know all too well that things can go sour so very fast. We are grateful for the good days. So very grateful.

on another unrelated note . . . Kristina was chosen to speak at her graduation for Provo High. She's an amazing writer and speaker. We are proud of her.

Have a great weekend!

Yard Sale . . . Part 2!

So, after being rained, hailed, and snowed out last Saturday, we are trying again this Saturday, May 8th, from 8-2. We did sell a few things last week, but we still have a lot of good things to sell. Come if you can. :)

If you would like to donate to our team, No Guts, Moore Glory, go here: cctakesteps.org/slc and click on donate to walker. You should be able to see our team listed. We had such a fun time last year, and are looking forward to this years walk on May 15th.

Brent is doing really well, and is finally back to work full-time after 8 months. :) He is down to IV TPN only 3 nights a week. Miracles never cease.

Love ya,
Lisa

CCFA Yard Sale!

Hey everyone, this Saturday, May 1, from 8-2, we will be having a yard sale. All proceeds will go towards our team "No Guts, Moore Glory" for our Crohn's/Colitis walk on the 15th.

We have gathered ALOT of stuff, and appreciate everyone who has contributed to the cause. We have furniture, kitchen items, knick-knacks, skis, lots of clothes, a brand new crib, and other brand new items. We hope to have sno-cones and cotton candy also.

Please come! It will be awesome. :)

Lisa

p.s. if it is still raining, or perhaps snowing... we will reschedule for May 8th.

Well, ok, it's been awhile. I was reminded of that last night at Macey's. Thanks Shane! :)

I am happy to report that all is well. I hesitate to say that, because I always think I am going to jinx things. We never know what to think when things go right. We are too used to things going so very wrong. Don't get me wrong, we welcome all the good things, and we acknowledge the many blessings and miracles that we have witnessed over the past 4 years. We have had more than our share of goodness and miracles, and know that we can never in our lifetime repay everyone for your prayers and acts of service in our behalf. We try to do our part by getting back into the mode of being the servers, not the served. :)

Brent is holding steady and is back to work, working hard at getting back to full-time status. Since the accidental pulling of the drain by the surgeon, all has been well, and we just hold our breath that another abscess will not form. He is eating still, but will always have to have the IV TPN for nutrition as he does not absorb enough nutrition from the food he eats. Right now he is on 4 nights a week.

We just spent time down in St. George for spring break with Tina and David (and Michelle for a day). We had so much fun finding geo-caches in the red rocks above St. George, hiking in Zion's, and spending time with family and friends. Brent commented that he was very tired, but it was a good tired. He was able to see just how far he could push himself. We are paying for it today . . . at least he has an excuse.

Tina is completely healed and doing so much better since her heart ablation. She has her energy back, and is back to doing EVERYTHING she possibly can.

People often ask us about Joseph. Joseph also has Crohn's. He is doing really well since his surgery. He maintains his health with injections of Humira. He's trying to survive a difficult semester at BYU with an engineering math class kicking his butt.

Wow, we are one screwed up family in the health department. David, Michelle and I are doing great!! :)

We are doing a yard sale on May 1st for Crohn's and Colitis if you want to donate anything around your house or come buy anything. Everything we earn will be put towards our team "No Guts Moore Glory" for the Crohn's and Colitis Walk in Salt Lake City on May 15th. Should be fun!

Lisa

Brent says that the one word you never want to hear your surgeon say while you are lying on his table is "whoops." Yeah. We had a fun day yesterday. He had a fistulagram in the morning, which showed that the fistula is still communicating with the intestine, but it is smaller, and there is no longer a pocket of abscess. Yay! We area hoping that the Cimzia is working, and that it will close up on its own.

We then met Brenda for lunch since we had a couple of hours to waste waiting for the appt. with Dr. Price. He was encouraged by the films and the report of the fistulagram. He decided to start inching the drain out slowly over the next month to see if the fistula would close up behind it. That's when the OOPS happened. The drain came all the way out. He just kind of held it in his hand and said. "huh."

So, now we just wait and see what happens. If the fistula creates another abscess then he will have to have a drain put back in. He wasn't too heartbroken to get rid of the drain, as it was starting to really get irritated. So, now it's just a waiting game. . . again.

Brent has been able to go into the office almost every day for the past couple of weeks. Not back to full-time, but hey, it's a start.

Thank you to everyone for your prayers for Tina. She is doing really well. Her heart procedure/surgery went really well, and she has a 90% chance that it will not happen again. She is still very tired and sore. That should pass in a week or two. She is back to school, but just going to the classes she knows she can't miss. Bad timing, as it is the end of the term. Oh well.

Thanks again . . . for everything.
Lisa

My, how time flies.

I hadn't realized how long it has been since posting. I know you've missed us terribly. :)

Brent has been doing pretty good for a few weeks, and we don't want to jinx that. He is actually at work today, as in, physically in his office! That is awesome. I texted him and said I didn't quite know what to do without him here. Weird. So, we met for lunch. :)

Since stopping the Vancamycin, benadryl, and Rocefin, he has been feeling much better. He isn't in a constant fog anymore. He was so over-medicated that he couldn't even function. Crazy.

Yes, he still has the drain, although it's not draining much. He will have another CT scan, or Fistulagram probably next week sometime to see how the fistula is doing. We are hoping and praying for another miracle and that it is actually healing up on its own. Here's hoping for good things.

If you feel so inclined, please pray for Kristina. For those of you who are LDS, as we approach Fast Sunday this Sunday, please include her in your fast. She will probably kill me if she finds out I put her on "the blog" but oh well. The more prayers and good thoughts the better. Kristina will be undergoing a heart procedure on the 12th of March. She has been diagnosed with SVT (supraventricular tachycardia). Feel free to Google it if you want more info. Basically, one of the nodes in her heart has two paths in it instead of one, and they have to go in and cauterize one of the pathways so that the sensors can only go in one of the pathways, and allow her heart to function normally. Right now, the sensors just kind of go in circles. Dennis says she has a circus in her heart. He thought that kind of fit. :) She has been randomly blacking out since December, and is just so tired all the time. Now we know why, and hopefully this procedure (ablation) will fix the problem.

Some of you are now thinking, Geez, does it ever end? Yeah, we kind of think that too. Brent made an interesting observation the other day, after finding out about all of this. He said, you know how there is always that one family that is just so needy, and has so many problems and are just a pain in the butt? Well, we've become that family in the neighborhood. Sad, but true. We try not to be needy, only asking for prayers, but we sure are pains in the butt sometimes. :) Thanks for hanging in there with us . . . again.
Lisa

Well, we haven't really posted anything medical for awhile. That's good, right? We just got back from an extended weekend in St. George. Sunny and warm St. George. :) It wasn't much fun coming back to cold and rain. It was good to spend time with Dennis & Jan and Kathie.

Before we left on Friday, actually on Wednesday, Dr. Price took Brent off of the 2 IV antibiotics vancomycin and rocefin. He has felt so much better since not taking them. He was feeling so over-medicated that he couldn't even function most days. He had to pre-medicate with IV benadryl for the vancomycin, and that would knock him out for most of the day. We are glad to be done with those, however short the reprieve may be. With the fistula, and the drain still in, I'm sure the "no antibiotics" time is short. Oh well, we take what we can get. A trip to St. George was very much needed, and we couldn't have gone if he was still so drugged up.

Not really any other news. No appts. this week . . . at least I don't think so. :) Here's hoping for a good week. Maybe he will even be able to work! That would be awesome.

A Valentine for my sweet wife

Given that it is Valentines week I decided it was my turn to post to the blog.

When my sister used to work for a jewelry company Valentines was the easiest holiday to handle. She would call me up in mid January and tell me what I was getting my wife. Add a card and maybe some chocolate and the day was handled.

It isn't as easy any more.

This is my feeble attempt at showing how much I appreciate my sweet wife and all she has gone through in the past few years. We are approaching 25 years together (April 19th) and definitely hadn't planned for our life together to turn out as it has. We have been greatly blessed with four wonderful children. All of their good traits can be attributed to Lisa's wonderful mothering skills. All of their bad traits can be blamed on me.

Lisa has always been faithful to the Lord and supportive of me in all of my callings. As I'd leave for another scout campout and she'd be left with the younger children she never complained. She became just as involved in the program as I was and may young men benefited from her work.

In the past four years Lisa has had to assume a tremendous load as we keep fighting my health problems. She has had to learn a whole new medical vocabulary and has become very much my protector and advocate with our doctors. She has learned to perform medical procedures that would make most people faint and lovingly performed them for months at a time. She has even been told by our surgeon that she is officially an "MD" because of some of the procedures she performed (I won't go into the gory details). She has driven thousands of miles in order to either visit me in the hospital or make sure I get to my various doctors and procedures. And during all of this she has completed her Bachelors Degree at BYU and kept our family together and our kids pointed in the right direction. How she does it I'll never know.

There are times that we both feel as if we can handle no more, but at those times our faith in the Lord and our love for each other, along with the love and support of so many friends, seem to get us through.

I am truly grateful that 25 years ago she was nuts enough to marry a skinny geek with a bad gut. I am also grateful that she is mine through the eternities - it will take me that long to truly express my appreciation for all she has done for me.

Happy Valentines Day
I Love You

Brent

Well, Brent made it to part of church today. :) He's passed out on the couch now, but he made it to church. That's a step up. Also, he took me out for dinner last night. He promised if he felt good all day he would take me out. (it's been a very long time since we've done that.) I was craving Red Lobster's biscuits. MMMMMMmmmmm. He had salmon. I ate all his biscuits. :)

Huh, well, suffice it to say that we will not be doing methotrexate injections any longer . . . not a fun night for Brent.

Yes, No, Yes, Yes, No??? Yes.

Taking things with a grain of salt keeps you from getting your hopes up too high. Final word, I think, until someone changes their mind again, is that YES, there is a fistula, and YES it is communicating with the small intestine. I was thinking a swear word, but I will spare you the profanity. :)

Brent had a 'fistulagram' this morning in SLC. That is when they inject dye into the drain and see where it goes. Well, it went . . . right to the intestine. So, since there really isn't anything draining into the drain, we would assume (I know, I know, never assume) that it is a very small fistula that isn't really draining anything from the intestine. And, since it is small there is a greater chance of it healing without surgery.

The whole problem right now is the active Crohn's. It doesn't want to cooperate. The quick solution to getting his Crohn's under control is high doses of prednisone, but we can't do that because the prednisone inhibits the whole healing process. It's a vicious circle.

Visits with the surgeon yesterday and the G.I. doc today haven't led to many answers. It's just a waiting game still. Of course the surgeon doesn't want to go in because that leads to a whole new set of problems. He is running a culture on the drain to see if by any chance we can eliminate any of the IV antibiotics that make Brent feel like crap. I hope so. The G.I. doc is trying to get him back on the Methotrexate, since tests were inconclusive on whether or not his problems last weekend were related to the methotrexate. It is only 1/5 of the dose he was previously on.

So, to sum it up . . . not really any changes. Patience, I've decided, is definitely NOT one of my virtues. But, we still keep keeping on. That's just what you do. Right?

fistula or no fistula . . . that is the question . . .

So, Brent had another CT scan yesterday. We've decided we are going to start using him as a nightlight. We're pretty sure he glows.

The report was actually positive. It looked good. It showed the abscess resolved, which is interesting since it is still draining . . . hmmmmm. It also said that there was no fistula. The last 2 CT reports said that there was a fistula . . . hmmmm. Not that we don't want good news, we just think it's funny that different CT reports say different things. We kind of take them with a grain of salt. It did show the area of active Crohn's. Unfortunately that part didn't disappear. Dang.

We are still trying to figure out why he keeps having fevers. We are waiting for biopsy reports on the sores on his hands to see if they are being caused by the Methotrexate or not. Dr. Hemmert doesn't want to discontinue the injections if he doesn't have to. We've got to get the Crohn's under control.

He spends his day hooked up to various IV antibiotics, which make him very nauseous and tired. We are trying to find foods that will cut through the antibiotic taste that lingers.

So, that is the latest. Not much new. Hoping for better days.

Just to let you all know, Brent did come home last night. We got back around midnight from the ER. Basically all they did was pump him full of 3 bags of IV fluids, and took a bunch of blood for cultures and labs. Ultimately, the decision was up to us as to whether they admitted him or sent him home. They basically said that there really wasn't anything else they could do at the hospital that we couldn't do at home. We have IV fluids, and all the antibiotics you could ever want right here at home. He had a pretty good night with no fevers. He's hungry, which is also a good sign. We still think it was some kind of reaction to either the Methotrexate or any number of drugs we are pumping into him currently, or perhaps all of them at once? Who knows. More news as it comes. Hopefully nothing exciting. :)
lisa

Well we are sitting in the ER at IMED in Murray. Life just keeps getting better and better. They will most likely be admitting him. He was running high fevers, nausea etc. WE think it us an adverse reaction to Methotrexate, but they have to rule out line infections and any other infections. Craziness. We are just so tired. Please pray for Brent. Thanks.
~Lisa

Brent is home from the hospital. Lots of antibiotics. More later.
lisa

Barring anything weird, Brent will be coming home tomorrow afternoon. We think all the Dr.s got their ducks in a row, and figured out which antibiotics he should be on. He will come home with a strict regimen of IV antibiotics that we will have to administer throughout the day. vencomycin, rocefin, and diflucan, plus the normal TPN. He will pretty much be hooked up to IV all day. But, at least it's at home. If our surgeon makes it back from Haiti on time, we meet with him on Tuesday. Brent still has a drain in, and they are talking about taking it out slowly, as in week by week moving it out a little more, hoping that the abscess closes up once and for all. We are still not 100% sure what was causing the high fevers. It could be the staff infection in the Hickman lines, it could be the inflammation in the intestine, or it could be a combination of both. With a little luck, the antibiotics will work, and we can just get on with our lives. That's really all that we desire. We know that Brent will always have health problems. We know that he will always be TPN dependant. What we wish for and pray for is just some semblance of normalcy back in our lives. Thanks always for the prayers and best wishes. We love you.
lisa

There really isn't much news to tell. Brent is still chilling in the hospital being pumped full of various antibiotics to treat various infections. The Hickman line tested positive for staff, but we still haven't heard if they are going to replace it or not. Yesterday was a holiday you know . . .

There was talk yesterday by one Dr. that he may be released today, but I'm not so sure. I guess we will see what today brings. As much as we would rather he be home, I don't want him to come home only to have to rush him back with fevers and pain again. I would like more definite answers and solutions first. We realize that Brent is a special case, and nobody really knows what to do, and our surgeon is off to Haiti, but I want more answers than what we are getting.

As always, the kids go into hospital mode quite easily. I'm thankful for responsible capable children who I know can take care of themselves while I spend time at the hospital. Our kids are awesome.
~lisa

Ok change that.
The line DID test positive. Treating with vencomyacin(sp?)which he reacted to last night. They now have to shoot him up with benadryl & Tylenol before administering it. Yippee. Haven't heard if they are going to take out the Hickman.

Well, not a whole lot to tell. Brent is up at IMED in Murray. They took a bunch of cultures last night. So far, they showed that there is no infection in the Hickman lines, or in his blood. The drain showed lots of different things, but I can't remember what they are. No surprise there. They are just pumping him full of antibiotics and anti-fungals, and lots of fluid and TPN. Colonoscopy scheduled for the morning. Woo-hoo. He's bored and tired but I don't think he has resorted to counting the dots in the ceiling tiles yet. Yes, he can have visitors, (healthy visitors please) and enjoyed several today. Thanks. Hopefully we will have some answers tomorrow.
lisa

Well, if you haven't already heard, via Facebook, texting, or the grapevine, Brent is back in the hospital. He is up at IMED, in Murray. Since we refuse to ever go back to UVRMC, that is the best choice. Our surgeon is up there, although, as we found out today, he has run off to assist others in Haiti. He always runs off when we need him. :(

Brent has been feeling rotten all week, and it just kept getting worse. Fevers, pain, and lots of other stuff that I don't want to try to explain. I'm too tired to talk medical jargon. When we went to our GI today to get injections of Cimzia & Methotrexate, our wonderful, best nurse ever, was a bit alarmed at how his condition had deteriorated since Tuesday. After phone calls to THE Dr., and conference calls to the surgeon and other Dr.s they determined he needed to be hospitalized. Basically, they need to find out where the cause of the fevers is. We know that the Crohn's is raging, and they are trying to get that under control with increased doses of Cimzia and methotrexate. Tonight they took cultures of EVERYTHING, and did a chest x-ray. They are starting fluids and and IV antibiotics.

We are hoping beyond hope that this can all be resolved without going back in surgically. We've had enough. Seriously.

So, once again, we thank you for your love and support, prayers, good thoughts, just everything. Me may falter and lack in faith sometimes, but we do know that we are loved.Thanks.
lisa

Well, no news, is definitely not good news in this case. We really don't know anything new from our visit with the surgeon and the CT. He couldn't see the CT on his computer, so we are waiting to hear from him tomorrow. One drain was removed, which is positive. It hadn't drained anything since the first day. The other drain continues to drain. Today they inserted dye into the drains to see where the abscesses go. Unfortunately, that is the report he couldn't bring up, so we don't know. He also did another culture on the drain, but that takes 24-48 hours to get results. Still not sure why he is running constant fevers, or why the pain. Probably just the Crohn's running rampant. Dr. Hemmert is trying to get approval from the insurance company to up the dosage of Cymzia, so hopefully that goes through soon. So, basically, we still don't have any answers, and that is very frustrating. Hopefully we will learn something tomorrow.
lisa

So, I realize that I don't post very often. Maybe it's because I feel like when I do write anything, it is negative. Personally, I'm tired of negativity. It certainly doesn't do a body good. Realizing that I created this blog for the updates of Brent's surgery, I certainly didn't think I would still be posting 4 months later. Crazy. And sad. Nevertheless, here we are.

So, not a whole lot to report, other than we are still nursing two drains, and very active Crohn's. Brent is quite sick, and very frustrated. He is scheduled to have another CT on Tuesday up in Murray with the surgeon. This one will hopefully show once and for all if the abscesses are communicating at all with the intestine. They will inject dye into the drains and watch where it goes. We have got to find out why the abscesses keep returning in the exact same spots. It could actually be a stitch that did not dissolve, left over from surgery. Fun.

Brent also will be starting new meds, and more of the Cymzia this week, to hopefully get the Crohn's under control.

It is extremely difficult to sit and watch him feel so miserable. A lot of people keep asking what they can do to help . . . the only thing I ask of you is your prayers in his behalf. I don't care what God or being or Karma you believe in, please say a prayer for Brent. Most days I feel like that is all that we live on. We have the best doctors and nurses we could possibly have. They work so hard in our behalf, doing research and contacting colleagues in our behalf. Please pray for them also, as they struggle to find answers on how to restore Brent's health.

Thank you so much. We couldn't fight this battle without you. :)

lisa

Good riddance 2009.

We bid 2009 good riddance, and wish for 2010 to be much healthier, happier, prosperous, fun, and memorable.

From our family to yours, Happy 2010!