Monday, February 14, 2011

CF SUCKS

So, I have not been on in a while here posting, nor Facebook. I have been going through so much lately that I feel like I am just so mad and angry at CF. More now than ever.
Hunter has been having issues with his sinuses for so long. Antis that have been presribed for the past have usually taken care of the stuffy nose thing. Nothing coming out when he blows it, no other symptoms, nothing. So, last Friday we took him into the ENT to finally figure out what has been going on. Hunter, since last October has been on antis every month for his sinuses. Nothing's worked. He had a CT scan of his sinuses on Friday and was told to call today to get the results. I did, first thing I did this morning. I called and the nurse says, "I will have to have the Dr. call you." My question then was, "What's going on?" She said " It's showing severe sinus inflammation and the Dr. will call you today to let you know what to do." "Um, okay."
4:00 came and I called them again. I told the nurse to make sure the Doc gets this message as well as the other one because I WANT answers.
So the Dr. calls back at 4:30 and says that Hunter has sinus disease which is basically saying sinus inflammation. He said that he has so much inflammation (gunk) in his sinuses under his eyes that the best thing to do would be surgery. My heart dropped. He said being his past and antis not working previously, that this would be the best option. It would be an incision, for under his eyes, where all the gunk is at. He said it's like us doing CPT on his lungs for the mucous but the mucous is in his sinuses. What the hell is going on.
Hunter has always been so healthy when it came to CF as is Ren. This is something that I know may be minor to some, but major to me. I hate CF. It's just one more thing that I feel CF is trying to control, and it WON'T!
Rens on another anti for this persistant cough that she has. I just want CF to go away already. Please, God, just take the CF away.
Going to be strong for Hunter during this time, although, I want to cry and punch the friggen wall at the same time. But, I HAVE to stay strong.
The nurse is going to call in a couple of days to set the appt up for his surgery. Outpatient, should only take a couple of hours and will be able to go home. Thank God for that.
Prayers. Simply said...we need your prayers.
I always tell the other mommas to stay strong but now I have to take my own advice.

4 comments:

  1. Hang in there mama, Courtney just had sinus surgery today and honestly it was something I knew would come but I didn't think it would be this soon. When it comes to my kids and you say surgery to me that is major. Deep breathes and again hang in there. Many prayers being said.

    Mandie

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  2. (((HUGS)))

    Any operation on your child is major and I don't think anyone would see this as minor.

    Personally haven't any experience with sinus surgery with Soph, I've had a few issues but nothing compared to Hunter.

    Huge prayers and positive vibes coming your way. You are strong, you just need to find it within you again, it's easy for it to fall off the radar from time to time, especially with so much we face on a day to day basis.

    Keep us posted on it all and i'm sorry he has to have the surgery but it may make a real difference to him. Has he been complaining of headaches??

    Also hope the antibiotics clear Rens cough too.

    Take care Erica and if you need anything, let me know.

    xxx

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  3. I am going through similar anxiety. We are a couple weeks away from finding out if we're setting a date for Harper (will turn 1 in March) to have eye surgery for a lazy eye. The doc and nurses say it's so routine, my sister and my husband have had eye surgeries, but yet it's like "You're cutting into my daughter's eyeballs!!" It's the anesthesia part with CF that really freaks me out. Her brother (also with CF) has been put under twice for a foot surgery and always done well so that is keeping me feeling strong. But it is definitely tough and sometimes I feel so angry too. Like "Seriously, one more thing?!" We sometimes feel like we can't get a break. Know that I'm thinking of you and your wonderful kiddos. I hope this surgery fixes Hunter's sinus issue and he can get some relief finally.

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  4. I just came across your blog and I can relate! My son with CF is 6. He is having his 8th extensive sinus surgery tomorrow. It is horrible. We cannot keep his sinuses clear no matter what we do. He now has a port and has to get IVs every 2-3 months because orals no longer work. I am so upset because he is in constant pain between surgeries. Ugh...

    www.caringbridge.org/visit/aidanneville

    I hope the surgery helps (it really does!) and he gets some relief. I hate CF so much right now too, we just can't get a break. Hang in there. Megan

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