Wednesday, September 30, 2009

An update, finally.....

Thanks to everyone for the emails, phone calls, etc. I figured it was high time to get an update posted.

Brent was released from the hospital last Tuesday. Basically we felt like they were at a loss as to how to help him and instead of trying, they sent him home. I am frustrated in many ways by this. They told him to continue taking the Bactrim, which makes him sick and isn't really helping. I'm more and more convinced that he is allergic to it. If he didn't already have the appointment with the infectious disease specialist, we would have fought really hard for him to stay in the hospital. However, knowing that he was going to see Dr. Shelly, we decided to get him home and let him rest here.

Monday this week brought about its own challenges. Tyler's g-tube came out. We're not exactly sure when. It was in and working fine on Sunday night and I saw that it was in on Monday morning when I changed his diaper. However, Brent went to change him for nap and it was out. I tried getting it in and it wouldn't go. So off to the ER we went. They tried but had no luck. They decided to admit him and hope that they could get him scheduled for surgery yesterday. That didn't pan out. So now we are home again and hoping to get surgery scheduled next week to replace it. Having a vacation at Hotel Strong was not exactly top on our list. But it was nice to see all his girls, (the awesome nurses and techs) and also a couple of friends who are inpatient right now.

Brent had his appointment with Dr. Shelly yesterday. For the first time in a long, long time, we finally feel like we have a plan of action. Dr. Shelly spent a lot of time listening to Brent and I, attempting to understand the situation and reading through all of Brent's medical records. He spent a lot of time studying his labs and trying to understand everything. Finally he explained things to us in a way that makes some sense. He told us to ignore the MRSA for a minute. He said that he doesn't consider Brent to be a person who simply has MRSA. Instead, he considers Brent to be a person who gets these horrible, open sores that refuse to heal. The sores can, and do, appear anywhere. He has had them on his hands, legs, arms, feet, etc. He gets them, they get larger and larger and they don't heal. The question is why. What underlying issue is there that is causing him to get these? Second to the sores is the fact that our family is colonized with MRSA. Once he develops one of these sores, the MRSA takes advantage of it and makes it worse. So, the doctors and the hospital see the infection and attempt to treat it. But they aren't trying to figure out what caused the sores in the first place. That is where the mystery is.

So now what? First of all, he told him to stop taking the Bactrim. THANK GOODNESS!!!! He said that it clearly isn't helping anyway and it is causing more harm than good at this point. He said that we need to be diligent in watching for fevers and such because of the MRSA. The next thing he is doing is a whole lot of blood work. He is going to test for many things that no one has looked at yet. Everything from rheumatoid arthritis to lupus to hepatitis, and the list goes on and on. He is thinking that Brent has some sort of autoimmune disorder that is causing him to not be able to heal these sores on his own. That would also explain his other symptoms....fatigue, muscle aches, etc.

So for now, we wait again. We are praying for an answer. We feel like at this point, we can handle anything as long as we know what it is. Brent has been a trooper through all of this. I know he is miserable. I know he is in pain. But he is strong and I know we can make it through this.

Please continue to pray for our family. Your prayers are heard and they are being felt!! Thank you for all the love and support you give to us!!


Trista said...

Thanks for the update. I guess some answers are better than none. Of course, the RIGHT answers would be the best, but hopefully they're on the way.
Always in our prayers!

Julie said...

i am soooo glad you have an MD that is listening and seems to have the knowledge to get to the bottom of this. YAY!!!! Hang in there. Those autoimmune things can be hard to diagnose, but it sounds like you are on the right path!! YAY

Amanda Smith said...

Jodi, I went through this with my husband, and the reason he got the MRSA was a patient at work...he had to get a PICC line and do 4 weeks of vancomycin to get rid of it, but now his sister has it sometimes...the one thing they all have in common is they all have thyroid disease...just thought I would let you know