Thursday, March 10, 2011

Limbo

Sorry the month of February was short on content for me. I could say it was because I was busy, or because of some other great excuse. But in reality, it's because we're in limbo. And when you're in limbo, what's there to say? Our lives really are on hold, while we await the end of Jordan's antibiotic course. But I suppose I'll try to give you a wrap up what's going on.

Our pedi came over to our house to go over JoJo's chart, page by page, with me. She spent the entire afternoon with me. We looked at every lab that had ever been done, every infection he's had, every antibiotic he's been on. We read every write up that any of his specialists had written. I have to say it was a bit overwhelming. We came up with a plan: She was going to contact his pulmonologist at UNC to see if she could help us coordinate the tests that still needed to be done. In the interim, we would continue to give JoJo his 6 week course of antibiotic for the sinus infection, and then we'd go back to ID dr after the course was finished and see what he had to say.


The other day, our pulmonologist called me to speak with me because she wanted to follow up about our pedi's email. She was so wonderful before, but then she went out on maternity leave. While she was gone, we saw some other great doctors. It was during that time that his other symptoms started, so she was unaware of all of the others. She asked a lot of questions, and was very kind. Based upon my answers, she told me that they were setting up some tests for our appointment next Thursday. She promised me that even if the tests come back clear, that she would make sure we would figure out what "it" is. I finally felt reassured that we have someone at UNC who will make sure we get to the bottom of what's going on.

It was kinda funny because shortly after I got off the phone with the awesome Dr. Champion, the phone rang again and it was Jordan's infectious disease doctor, who was returning my phone call. I had called to see if they were going to be doing any repeat sinus x-rays, and if so, if they could be ordered & done prior to our appointment with him, so we wouldn't have to wait. I'd mentioned before I felt he totally blew us off at the last appointment. And he tried to do it again on the phone. I reminded him that we had several other appointments that day, other tests to be done as well. And then I reminded him that the six weeks are up, and unfortunately, JoJo is still having fevers. He acted surprised, and asked me how often and how high they got Once again, he acted surprised. "I wasn't anticipating the fevers to still be happening." I think he finally realized that maybe there was something more going on! He asked what tests were being done by Dr Champion and he said he'd probably tag a few more on to the ones she was ordering as well, but we would talk about it more at his appointment.

So anyways, limbo is a quite literally a crappy place to be. I change a ridiculous amount of DISGUSTING diapers every single day. On top of that, we can't go anywhere as a family. We split weeks up to go to church services. We're getting weary. I just want answers. Hopefully this time next week, we will have answers. But then again, I've been there done that, and been left with more questions than answers, more medicines and more doctors to see. So it's hard to be hopeful any more...


1 comment:

Jen Norwood said...

Christy, I hate that you all are having to go through this and I want you to know that I will continue to pray. I'm sure you will eventually get to the bottom of this and get the answers you (and Jordan) so badly need...I'm praying it happens soon. (hugs)