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!