Ok, I've been chastised again for not keeping the blog up to date. :(

Since coming home from the hospital on April 14th, we have had good days, and we have had bad days. Mostly bad. Brent just can't seem to get over his extreme nausea. We have no idea what is causing it. We thought it was the antibiotics, but he has been off of them for over a week now. Hmmmm. Wish we could figure it out. He is miserable.

The incision is healed, the drain site is almost healed (the malecott drain that was in his intestine), and the jp drain is still in and causing lots of pain. We saw Dr. Price yesterday, and the drain stays in for at least another 3 weeks, after which we will have another fistulagram/CT to see what is happening with the abscess/fistula that is being drained. the hope would be that the fistulagram shows no connection with the intestine. The last one showed a very small tract to the intestine, but that could have closed up, leaving just an abscess. just? yeah, whatever.

Brent has only been out a few times since coming home. Unfortunately, twice were for funerals, and twice for Dr. appointments. He did make it to church on this last Sunday just for Sacrament Mtg.

It was a sad occasion to attend the funeral of his Office Manager, Mickey, but it was also very therapeutic to see everyone from the office. What an amazing family Mickey has. That was a wonderful service and tribute to her. We were so grateful that Brent was able to stay for the whole funeral. And we are very grateful for the friendship of all of his co-workers. Your support is appreciated.

The girls will be home in a couple of weeks for the summer. Luckily they both have summer jobs. Yay!

that's all the excitement/news from around here. Just status-quo for now, but hoping that things get better and the nausea passes. Thanks for checking in.

Lisa

Not a lot happening that is newsworthy. Brent is still home. He is fighting nausea, and general post-surgery stuff. The nausea is the worst part. We can't figure out what is causing it. He's not eating anything, and it doesn't seem to happen at times when he is hooked up to antibiotics. Oh well. He slept a little better last night which is good. Having him home is nice, but nerve-wracking also. We worry too much about this or that. We don't have nurses 10 yards away when something happens. Oh well.

He still has a drain in his side, but the midline incision has healed quite nicely. Here's hoping for a quiet week, as Dr. Price is out of town . . . again. This time for family, so that's ok. He deserves a break.

Thanks to all for the goodies, meals, and correspondence. you're awesome.

Brent just got home! Yay! Now the real healing begins. Everyone knows that you just don't heal in the hospital. Healing requires sleep and rest and that is not allowed in the hospital. :)

We are truly grateful for the dr.s and nurses we have had. They have been amazing.

If you want to visit, please call first, and if you are sick, even with just a cold, please wait to visit. Brent has no immune system and any small illness could land him back in the hospital. Thanks. That's my wife/nurse/mamma bear lecture.

As always, we are overwhelmed with love and appreciation for all that you do for us and for the many prayers offered on our behalf. May you be blessed also.

Lisa

Well, tomorrow is the target date. If all goes well tonight, Brent will come home tomorrow! Please pray for a quiet night. We really need him at home to finish recovering.

We pause from our worry of Brent, to share and send our condolences to the Gubler family. Mickey is a dear friend and co-worker of Brent's and has been so supportive and loving to us throughout all of our trials. It was a very unexpected death, and very hard to believe that she is gone. As Brent said on Facebook, "I don't weep for you, I weep for those left behind that will have to wait to see you again. God bless the Gubler family." Our prayers go out to Jeff and the family and to all those whom she has touched. May we find comfort in knowing that she was a daughter of God, and that we will see her again.

Lisa

So, today Brent is starting back on clear liquids. Dr. Price was happy with the CT results and they are going to take it very slow in introducing anything new into the equation. I guess we will see how he does with clear liquids today. Yay!

Well, I wish I had more to report on the CT scan. They didn't do it until about 3:00. So far we haven't gotten any official results. Preliminary results just from the radiology tech was that there was no communication between the intestine and the drain/pocket. That means that there isn't a leak I think. Hopefully that is the case. The drain isn't really draining much, so that is a good sign also.

Brent did get his 35 staples out today. Ouch! That wasn't a real pleasant experience for him.

What we are hoping is that tomorrow they will start again with the the oral meds. That is the last step before coming home. He has to be able to take his meds orally, except for the IV antibiotics. We can do those at home.

Hopefully I will have good news to report tomorrow.

Lisa

Thank you for all of your responses to my last post. I don't have any way of knowing who visits our blog, so it's nice to get comments.

Since our last update on Brent's progress/set-backs, we have lost the NG tube, the heart telemonitor with all of its annoying leads stuck all over him, and the finger pulse monitor. Yippee! He is only hooked up to his IV pole when he is getting his TPN or IV antibiotics. It's nice to go for walks without the IV pole.

Tomorrow Brent will have another CT scan to see what's going on internally. The JP drain is putting out suspicious stuff, so we need to see what's going on. We should know more after the CT scan. The white count was back down to normal today, so that is good. He's getting enough antibiotics to cure a horse or two.

I am hoping that if the CT scan is ok, that they will send him home. We can continue the IV antibiotics at home.

Many of our church members fasted and prayed for Brent today. We appreciate that so very much.

If you are wondering about my Mom, the diagnosis was not what anyone, including her oncologist, expected. It was not her non-hodgkins lymphoma, or her breast cancer, or lung cancer. The surgical biopsy said it is mesothelioma, (sp?) which is from aesbestos exposure. Really??? Are you kidding me? No course of action has been set yet. Craziness.

Anyway, nothing else to report. Brent has appreciated those who have made the trek up to visit him. Thanks. Hopefully some positive results to report tomorrow.

different kind of post

So, I feel like I am always the bearer of bad news. That gets a little bit depressing after awhile. I know that I created this venue for the sole purpose of reporting on Brent's condition. It has been a great way for all of our family and friends to keep up to date without me having to be on the phone 24/7 trying to remember who I told what.

Today I would like to share with you a few feelings I had last night while waiting for Brent while he was down in radiology having another drain placed. If you aren't into emotions and warm fuzzies, then stop reading. :)

We get pretty discouraged when all of these complications arise. We would love to have a normal surgery and recovery time. Many times our frustrations and anger get the best of us, and that, coupled with little or no sleep, leads to major depression.

Last night, as we found out that he was full of fluid and infection, the fear and uncertainty set in. Here we go again. When the final decision was made to go down to radiology for a drain, Brenda, (Brent's sister), asked if I wanted her to come sit with me. I said no, as I was feeling extremely tired and just wanted to be alone. Brenda has been awesome in keeping me occupied and eating healthy. :)

I posted updates on here, and checked Facebook. I read all of the encouragement and love and instantly felt sustained. I Talked with Dennis, Brent's brother, and Kathie, our sister-in-law, and felt their love and concern also. I texted a few friends, and was texting the kids to keep them up-to-date. It's hard for the kids to be so far away. I was slowly feeling a sense of calm. I turned on my ipod with religious music playing, and just kind of tried to rest. I texted our Home Teacher and our Bishop. Bishop said a good scripture when you are feeling tired and frustrated is Doctrine & Covenants 121:9. This section was written while Joseph Smith was a prisoner in Liberty jail. (verses 7-9)

7 My son, peace be unto thy soul; thine adversity and thine afflictions shall be but a small moment;

8 And then, if thou endure it well, God shall exalt thee on high; thou shalt triumph over all thy foes.

9 Thy friends do stand by thee, and they shall hail thee again with warm hearts and friendly hands.

At that same exact moment that I read that scripture, I got texts from two of my dearest friends. The strength and support that they give to me is amazing. My friends do stand by me, and for that I am grateful. One friend should have been asleep, but texted back and forth, lending support. I could feel the prayers offered in our behalf, and at that moment I was blessed with the strength that I needed. I felt a calmness overtake me and I just felt like I was rejuvenated once again.

When we feel helpless and useless and very overwhelmed, we need to remember that there is nothing we can do to change the circumstances surrounding us. We need to let it go, and turn it over to the Lord. One friend always says, "It is what it is." Another friend reminded me that " it has been said that when you feel like you can't take it anymore you need to focus on why you have fought the fight in the first place. Concentrate on the good and that will help ease the bad..." He also reminded me that 'He' has already given me the strength. I just have to remember that and tap into it.

I knew at that moment that whatever happened/happens is totally out of my control, but I can rely on my faith and my friends and my wonderful family to sustain me no matter what. The complete calm and assurance that I felt was overwhelming. I'm grateful for this experience.

I'm tired of the shear panic and fear that has been a constant companion to me for the past 5 1/2 years. We cannot determine what the future will bring, but we can stop worrying so much about it.

I love my husband more than words can ever say. I hate seeing him suffer time after time after time. I'm grateful that he has not given up, but that he continues to fight to remain here on earth. I am thankful for all of our family and friends who have given so much of themselves in our behalf. You will never know what you mean to us, as it is so hard to put into words. We know that we can never in a million years repay you for your kindnesses. We only hope that we can ease your burden someday.

Sorry if I've rambled. You can just chalk it up to fatigue, or extreme humility when I think about all that I have to thankful for.

Lisa

He is back in his room. They put in another drain. That coupled with the NG tube should help. He is now on more IV antibiotics. Hopefully he can rest now.

CT scan showed stomach full of fluid and abscess. Placed an NG tube to relieve the pressure in his stomach and we are still not sure what is happening with the abscess. Dr. Price booked an O.R. And is supposedly on his way in, but the dr. On call booked radiology to place a drain, so we are not sure what's going on. Ok, never mind. Just took him down to radiology for a drain.

Prayers needed

Having another really bad day. Headed for a CT scan if they can get a peripheral IV in. Please say a prayer. Thanks.

jinxed

I knew I shouldn't have posted yesterday. I jinxed it. Brent had a really rough night and a bad day today. Hopefully we can have a good day tomorrow. The bad days seem to be getting harder to take. I think we are just tired.

Lisa

Well, we actually have good news to report for once! Yay! They took the pain pump away today and started Brent on oral pain meds. He also started clear liquids today with some broth and Italian ice. Yay!

No more heart scares since the code on Thursday. Thank goodness.

Hoping for a good week.

Thank you for your thoughts, prayers and continued support.

Lisa

Code what? To where?

Well, I've been trying to figure out what to report, and what I really don't need to report. It's been a very frightening couple of days, and I'm still a little freaked out.

On wednesday, when they went to replace the Hickman IV in his chest, they were unable to do it. A peripheral IV was needed so that he would have access to his pain pump and they could not place an IV. Brent is never hard to find veins on, and they even had a Life Flight paramedic try for an hour and he could not place an IV either. He could not have his TPN that night because there was no available port to use to infuse it. It was a long night, and I felt the need to stay with him.

On Thursday, things were a little better through the day. We kept waiting for them to come get him to try to replace the Hickman again. Finally at about 4:00 they took him down to Heart and Lung Angio. I was in his room when I hear the hospital intercom call a code to Heart and Lung Angio. I knew instantly that it was Brent. I can honestly say throughout all of the crap we've been through in the past five years, this was most scared I had been. The nurses station didn't know anything, but his nurse was thinking it was a code for him too. Meanwhile I called my sister-in-law who works across the street and she came over. Finally the nurse came in and said that yes,it was Brent, but he was now stable and ok. Apparently while they were replacing the Hickman, which is located right by the heart, something triggered his heart to go into SVT with a heart rate over 200. They tried everything to get it to go back down, but finally had to administer a drug that essentially re-boots the heart. It stops it and restarts it. The heart did go into normal rhythm after that. Geesh. I wouldn't believe them that he was ok until they let me see him. I totally understand the need for calling a code over the hospital intercom system, but perhaps it would be better if you couldn't hear them in the patients room. I think I had enou adrenalin flowing for all of us. Craziness.

I finally went home and slept. Today he is doing much better. Hoping I can take him outside for some fresh air since it is such a gorgeous day here in Utah.

Surgically speaking, Brent is doing great and healing. It all the other weird stuff that we are dealing with.

Thanks for the love and concern. We are ok at home and eating well there. Thanks Janice!

Have a good weekend, and for those of our LDS faith, have a great conference weekend. Looking forward to watching General Conference.

Lisa