Tuesday, April 28, 2009

Update

Man, have things been crazy! Gess spent Thursday night in the hospital with what they determined to be a migraine. He was in so much pain. I feel really guilty for not being there during the night because he had a horrible experience. I **know** that it is okay for me to go home and sleep, but when something goes amiss, I feel so guilty. It is such a struggle dealing with this part of CF life. Apparently he woke up and was in a lot of pain and couldn't see because of the migraine, so he couldn't find the call button. He ended up falling and hitting his nose on the bed, etc. Not good.

When I got there on Friday his pain was better, but still not manageable and his vision was still off. The neurologist decided that he wanted to do an MRI to make sure that there wasn't something else going on. The pain did get better, or at least under control, so when the MRI came back clean around 8 pm, he was discharged. They gave him a mix of medications that seemed to help with the pain AND allowed him to sleep, so that is something that we are going to explore further with the pain folks, since the pain medication that works (demoral) does not let him sleep. Speaking of pain, because of all of the stuff that happened, he hasn't been able to start the new pain regimine, so no update on that.

The weekend was pretty uneventful. We did some shopping and hung out with friends. I got a great print for our bedroom that I LOVE. I will have to take a picture and post it. On Sunday evening we decided to walk over to a local restaurant/bar for dinner and Gess started to cough up blood during that walk. Ugh. About a 1/4 cup.

On Monday we had a clinic appointment. We really like our new doctor. He is SO much better than the one we saw before. Gess didn't do PFTs because of the bleeding. The biggest item of discussion was obviously the bleeding. What the doctor wants to do is file for a consult with the intervental radiologist to see about scheduling an embolization. The IR team has been very hesitant to have anything to do with Gess is the past and the one embloziation that they did do did not go well, so I am anticipating some resistance. But I think that this is the right first step in getting this issue address. The doctor has already told us that he will send Gess to another hospital if he needs to, so I am hopeful that things will work out. I don't want Gess to have another embolization, but as far as I can tell, there isn't another way to stop this bleeding. He bled again last night, so they are continuing.

We also got back the results of the sleep test and Gess has mild sleep apnea with some desaturation at night, so the sleep team is recommending a CPAP. I have a CPAP (which I never use), so I was joking with Gess that would could have matching devices. I guess I'd better get mine out and start using it before he goes to get his :)

Gess is having a rough day today--he is understandably very frustrated with what is going on. I am too and I am also scared about how much this is affecting my work. It is a struggle to deal with these issues and work full time, etc. But, I am trying to stay optimistic about it. We'll see.

Thanks for all of the support during these crazy times!!! I really do appreciate it all!!

4 comments:

Elizabeth said...

Hey -- sorry we missed you on Monday. Glad they're trying to work wiht you on all this and hope you get good answers soon.

jordysmom said...

Won't you two be cute with your matching CPAPs?! LOL

I really hope this new doctor will be able to accomplish some positive things for Gess.

Stacey

Leena said...

maybe you can get matching cpap covers,like cellphones... ;)
Glad, too, that Dr's are at least trying to help figure things out. Prayin' as always. :)

Shannon said...

Wow Lisa, you amaze me. I hope the embolization does the tirck and Gess gets a break from all this for a long while.