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!!

Monday, September 21, 2009

Brent Monday Update

Just a quick update. Brent has developed a very scary complication to things. They had to remove his IV because it got infected. They put in a new one and that was almost immediately infected as well. They won't even draw blood at this point. Every time they poke him, he gets a new infection. His arm is starting to solidify where the infections are. Because of this, they obviously will not put in a central line. If it were to get infected as well, it could be fatal.

Now they are at a loss as to what to do. They are thinking of sending him home because there really isn't any reason to keep him in the hospital. He will come home on oral antibiotics again. Right now there just isn't anything else they can do for him.

He does have an appointment to see an infectious disease specialist next week. We are praying that they will be able to give us some more help.

This whole thing is just scary to me. I am worried about him. I'm worried that the oral antibiotics won't help. I'm worried that this will just continue to happen. I just don't know what to think at this point. As much as I want him home, I also worry that we're just going to end up in the same position soon. I guess for now we'll just have to wait and see.

Sunday, September 20, 2009

Brent Update

Brent is in the hospital again. This is the second time in about a month. Once again, he is fighting MRSA.
The Infectious Disease docs saw him on Friday. They are all in agreement that something besides the MRSA is going on. Yes, MRSA is a nasty infection. However, most people who get it can fight it off either on their own or with oral antibiotics. For many people, it doesn't ever return. They are concerned that there is something else going on with Brent that is causing him to get this over and over and over without being able to fight it on his own. So now they are talking about doing some tests to figure out if there is something going on in his immune system. So that's kind of the next step. They are also talking about sending him home with a central line, probably a PICC line, so that he can continue IV therapy at home. This is something we have been pushing for for a long time. We are really glad that the docs are finally starting to come around to this idea. The bottom line is that oral antibiotics just aren't enough for Brent. This infection continues to return, he goes to the hospital for a few days of IV treatment, comes home on oral antibiotics and we're back in the same boat again in a few weeks. All in all, this is his fifth hospital stay for MRSA and I'm not even sure how many times he has fought the infection out of the hospital. More than anything else, we just want him to get well. Hopefully by tomorrow we should have more information.

The other concern with Brent coming home without a treatment plan is Tyler's health. Obviously Ty has also battled MRSA quite often. Tyler's immune system is compromised due to the chemo and they're concerned that Brent and Ty are just passing the infection back and forth to one another. Tyler's Oncology team is starting to advocate for Brent and Tyler as well so that we can come up with a plan for both of them. We are so thankful for all of Tyler's doctors and nurses. They truly do have his best interest at heart as well as the rest of our family. We are so blessed!

Unfortunately Tyler has the same nasty head cold that Emma and I have. He has been pretty miserable today. Thankfully Em seems to be feeling better though she still has a yucky cough. Nate has started coughing and has the runny nose. Sounds like a barrel of laughs, doesn't it? :) The kids all want to go see their Daddy but I'm afraid to take them up there. I don't want to share germs or contract any new ones.

I will update again tomorrow when I know more. Thanks for the emails and comments left here and the love and prayers. We truly appreciate it!

Wednesday, September 16, 2009


This isn't just about Emmalee. :) But I have to share what she said first. She is so dang funny.

Emmalee was eating dinner and spilled a little. Her reaction? "Dang, and on my beautiful wedding dress and everything. I'm doomed!" I swear, she kills me sometimes!

The other comment recently came from Tyler. I just want to cry thinking about it. We were having dinner the other night and I was helping Ty eat. He looked at me and said, "I want to try." Wow! He asked, in a full sentence, for something he wanted. I am so proud of this child!

Wednesday, September 2, 2009

Fun Times in the Middle of the Night

Yes, it's 4:45 in the morning and I am awake. Or still awake, I should say. Darned insomnia. Too bad I didn't go to bed when I had the chance. Since I was up anyway I decided to Jenny, our dog, out to run. She loves to do that at night. Well, she ended up getting sprayed by a skunk. Lovely. I didn't realize that's what had happened until I had already let her in the house. So now the house smells awful. Luckily I found a good skunk smell remover for Jenny. I had to send Brent to Tops for peroxide. Thank goodness they're open 24 hours a day. It seems to have helped some though I will probably have to do it again. Incidentally, it is 32 ounces of peroxide, a cup of baking soda and some dish washing liquid. Mix well, rub it in, scrub well for about ten minutes, rinse well and ta-da. The benefit of that is apparently fleas don't like water or peroxide or baking soda. I didn't know she had any fleas. Now I realize the flea treatment hasn't worked so I'll have to try the more expensive one. Good to know. The other plus is that I just finished scrubbing the bathroom. Didn't really want to shower in there after giving the skunk smelling dog a bath.

I'm telling you, there are good times to be had around here in the middle of the night. Too bad they don't seem to include sleep.

Any tips on getting the skunky smell out of the house??