Tuesday, November 24, 2009

Brent Update

Oh my goodness, I guess it is high time I updated!

Brent had his appointment in NYC last Friday. The appointment went really well. Dr. Yazici was amazing, kind and very, very smart. He does think it is Behcet's. However, because Behcet's is a clinical diagnosis and doesn't have an actual test, he ordered a ton of blood work to rule out other things. Brent had the blood drawn at NYU Friday and they literally took about 15 different vials. As the doctor said, he does not think the blood work will show anything but he wants to make sure he rules out everything else. He said he is 98% certain Brent has Behcet's. He did start him on one medication, an anti-inflammatory, and gave him a prescription for another. However, he wants to work with Dr. Shelly, the infectious disease doctor, right away and get Brent on some sort of antibiotic. His main concern is that many of the drugs used to treat Behcet's are immuno-suppressors. One of the main ones is Methotrexate. Given the active MRSA infections, he doesn't want him to start the other meds until the infection is more under control, for obvious reasons. We explained to him that that made total sense given our experience with Tyler.

Brent will have to see some doctors here very soon. He needs to have a colonoscopy as well as see an ophthalmologist. Dr. Yazici is very concerned about some of the eye issues Brent is having and wants to have those checked out soon.

We also have to find a new PCP, soon! We do not want to work with our current doctor any longer. We explained to Dr. Yazici how he has treated Brent and he was disgusted. He is also very concerned with how much narcotic pain meds he has prescribed. He does need to have a PCP to work with so he advised us to fire our current doctor and find a new doctor as soon as we can.

There is still so much to digest. All in all, it went great and we feel like we are finally on the right track. Dr. Yazici is very hands on and very open to communication. He told us to email him directly and not to hesitate to call him if we need anything at all. He will need to see Brent every four to six months so we'll be going back again in not too long.

It is a huge blessing to feel like we are finally on the right track. Knowing that we have a specialist on our side, who is willing to help Brent get back to good health, means the world. It has been a long journey thus far and although we are far from the end, we are finally starting to see some light.

Thank you all for your continued thoughts and prayers. We are certain that it is because of the prayers and love from family and friends that we are strong enough to get through this. Happy Thanksgiving to all of you!!

Monday, November 2, 2009

Thanks, Girls!!

Hey Girls, you know who you are.....we love you! Thanks for all the great care of Natey. :)

Bring it on.....

So much news. First with Brent....my friend Nikki emailed me and said she thought we should look into something called Behcet's Disease. Brent and I couldn't believe the similarities. We are praying this is the answer. We found a doctor at NYU in New York City that is a top specialist in Behcet's Disease. We contacted him and his answer was quick and unexpected. He asked us to come to New York City and meet with him. We are thrilled! He cleared some time for Brent in his extremely busy schedule and we had planned to go to NY tomorrow to meet with him on Wednesday. (More about that in a minute.) We are praying that this is the answer and that Dr. Yazici will be able to help. The more we learn about Behcet's, the stronger we feel that this is the right path. We are truly thankful that Dr. Yazici is willing to see Brent on such short notice. I spoke with his patient coordinator and she said that he sees patients from all over the world. We feel so blessed that we live close enough to the city that we can travel there easily.

My mom arrived last Monday to help with the kids and stay with them while we're gone. We are so glad that she is able to be here. We have never left the kids while we've gone out of town so this is a big step for all of us. We pray that things will go well while we're gone.

As I said, we had planned to leave tomorrow. But of course, life can never be plain or dull or boring for us. Over the weekend, we had a little bit of drama.

On Thursday night I noticed that Nate had a sore on his upper left thigh. I just knew that it was a MRSA sore. Sure enough, by Friday morning, he was running a fever and the sore was huge, hard and hot to the touch. I called and made an appointment for him for that afternoon. By the time we got there, his fever was 102 and he was hurting so bad that he was shaking. The pediatrician sent us directly to the ER. They gave him some mild sedation and incised and drained the sore and sent us home with antibiotics. We were hoping that would do the trick. Sadly, it did not. By Saturday night his entire scrotum was swollen and red and full of infection. Back to the ER we went. They admitted him and on Sunday morning they took him down to surgery to incise and drain again. They wanted to do it in the OR so they could give him more sedation and make sure that they got it all.

That poor little boy! He has been in so much pain and I feel so badly for him. He spiked a fever of 104 last night and gave us all a scare. But, he has been fever free since then and they sent us home this afternoon. We are so glad!!

Needless to say, we have postponed our trip. Brent and I called this afternoon and they were able to reschedule his appointment for Friday the 13th. We are going to leave on Wednesday and spend a couple of days in NYC. Hopefully Brent will feel up to the trip.

So that's our crazy life. Not sure what I would do if things ever slow down around here. Maybe I could sleep. :)

Thanks to everyone, as always, for your love and prayers.