Thursday, August 16, 2012

Another Checkup

Victor has been doing really well and his CF team were happy with him at the last checkup. He's been gaining weight really well and is healthy. Because he is bigger now, we increased his salt supplement to 4ml a day. I still give it in small doses over the course of a day: 1ml twice a day and 0.5ml four times a day because it actually helps to settle him! When I put him to bed at night I will feed him and put him in his bassinet. He will be very drowsy and I will then give him a dose of salt and pop his dummy in. Then he will put himself to sleep! I usually do this for naps too unless we are out somewhere.

His doctor and I spoke about Victor having a CT scan of his chest and a bronchoscopy. This is to see if there are any bacteria growing in his lungs and to catch and eradicate them early if there are, before they do any permanent damage. Hopefully there will be nothing but if there is something in there it's definitely best to get it out quickly. He will have both procedures done under anesthetic. I am really not looking forward to it at all. I know it's for the best but of course I am worried. I just wish it were over and done with already. The admission paperwork came the other day and that made it seem much more real and scary. It's scheduled for next month.

Enjoying being outside
The CT and bronchoscopy are also used for research purposes, but we are declining to have that done at this point. That would mean sending copies of the CT images to the researchers as well as taking two extra samples during the bronchoscopy. I am in two minds about it: I understand that research is very important if we want to find a cure for cystic fibrosis. But on the other hand, he is still so little and we don't want him having any extra procedures done or samples taken if he doesn't have to. So we might reassess the situation when he is older but for now we aren't participating in research. That sort of makes me feel guilty, like we aren't doing enough to help find a cure. I guess we can just make a donation or something to ease my guilt.

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