First Hospital stay went great, but...

[ArtKat]

Hello, Everyone! I've been a lurker for a few months, just didn't quite know what to say. My daughter is 12, CF diagnosed via NB screening at birth, F508 & G85E. She's had consistently great PFT's and 2 sinus surgeries. Her overall health has been very good until last June. Her first CF exacerbated hospitalization occurred late October and went well with a one week stay, then IV antibiotics at home for the next week. She's back in school and going about her life and is happy. I, on the other hand, feel like I'm waiting for something bad to happen. The hospital stay completely undid me and I can't quit worrying and obsessing about my daughter's health. And good grief, my spontaneous crying is about to drive me over the edge! I burst into tears in the middle of a lovely date night dinner with my sweet husband.
Is time and meditation my answer? Has anyone else had this reaction to a productive and smooth hospital stay?

Kat

 

[wbj3nocala]

I think it's normal to have your response. I'm 51 with CF and at time have the same issue. Unless you think you're suffering from "severe" depression. Your child being twelve and now experiencing their first admission is a trying time for both patient and caregiver, just as my wife. Do talk about your experience so your husband understands the way you've processed this time. Do not hold it in unless you think you will scare your daughter. She may also help you cope by talking and asking about her feelings. You may find she too was scared or not at all. My first iv bout was at 17 and that was scary for me. It gets easier because you'll have expectations about getting/ feeling better after the ivs but it also disrupts plans or school, work and just about everyone around.
I've rambled on too much. Good luck and keep up the good fight!

 

[ArtKat]

Well, thanks so much for your honest and "common sense" reply. I've been talking with my husband and that's helped quite a bit. I feel better able to cope as each day passes and it's helped even more that my daughter hasn't skipped a beat. She's just about caught up on school work and is back to her normal routine. Her response to the hospital stay was the biggest surprise. She was very calm and matter of fact. Thanks again for giving me another perspective.

 

[Aboveallislove]

Kat,
Just wanted to add that as a mom I think it is TOTALLY NORMAL. I was a wreck for our DS's first hospitalization and it took me a tad to get back "in the groove." My "thing" was "I can't do this for 40 years." It rips you apart seeing them suffering, worrying, knowing the what-ifs could be "are nows," etc. etc. I think back to DS's diagnosis and how I was a wreck then. We learn to cope or if we don't we need to get help, but I think there is a range of "normal" and you are right there. Hugs and prayers.
-love

 

[welshwitch]

Hey! I'm 33 and in great health w. CF but even I need help every once in a while. I talked to a counselor when I was in my 20s and having some major fears related to my disease. She gave me some great coping strategies. My biggest problem was the worrying and "what ifs" were taking over my enjoyment of everyday life. Do you have a therapist or a social worker or a counselor? An objective perspective could really help. Good luck!

 

[Ratatosk]

Perfectly normal -- when DS was hospitalized as a baby, I had similar fears. What if he gets sick again, gets another blockage and has to spend time in the hospital. A few years ago DS had a 3 week hospital stay due to an obstruction and I had similar fears. In fact his doctor warned us that the first time he throws up we'll probably freak out, since that's how it all started. Sure enough, I worried; however, once we got over that little blip, I realized we got thru it, dealt with it, he's fine... Sometimes it just helps to turn to DH and say I'm worried, freaking out about___, what if.... and it helps to just talk it out.