Interesting Progress

So I guess this post is mainly for information for those of you following this blog. Throughout this journey with my son I have learnt lots about dealing with health care. When they diagnosed A with Beckwith Weidemann Syndrome and decided that he had to have ultrasounds every 3 months, they asked me to fast him for 8 hours. This didn't make sense to me so I asked questions about it, the first time they said well 4 hours then. The next appointment they said 8 again. Finally I asked the nurse at the stollery to find out how long they make children fast for the same ultrasound, she said they don't have any restrictions for children 5 and under. So today at A's ultrasound I started asking questions of the receptionist, her answers to begin with were we have restrictions and that's just the way it is. When I told her about the stollery and if I could get my ultrasounds read in edmonton she said no. I persisted with her, and said I was told the fasting was about his gall bladder and that has been removed, finally she said ask the technician. I asked the technician her answer was if his bowels were full we could look but we wouldn't see as well, I pointed out he hadn't had a bowel movement since I fed him at 8:30 last night. So I didn't see that being a factor, I told her about the stollery as well and she said we'll again we could look but we wouldn't see as well. I explained to her that A has special medical considerations and will have to have the ultrasounds every 3 months for the next 6 1/2 years. So I really needed an answer if something could make my life easier I was all for it. So she said she'd talk to the head radiologist. Who of course was not there at 7 am but at 9 am the receptionist phoned me and she had talked to the radiologist and A no longer has to fast because the liver and kidney's are not effected by fasting. They have now made a note in his file. So my persistence paid off. This was an issue for us because quite often A wakes in the middle of the night and has part or all of a bottle of milk. Every time I have worked to remedy this something else happens and it starts again. When he was in the hospital they were waking him up often and so he has had issues finding his rhythm again. Even last night he slept from 9 pm to 4 am when he woke up he needed a change and wanted a bit of milk, which I gave him he then went back to sleep for the next 2 hours. They never even noticed at the ultrasound. The thing is if I hadn't given him the milk he wouldn't have gone back to sleep and by the time we got to the ultrasound he would've been really grouchy and he wouldn't have laid still for the ultrasound. So I am happier now that he doesn't have to fast.

On closing note A did awesome for this ultrasound. I was a little concerned because his tummy is still a little sensitive and if you really try and get a look at it he pulls his shirt down and puts his hands in the way so I wasn't sure how he'd do with the ultrasound today. I am glad it's over for another 3 months.

I hope if any of you have to deal with the medical community I hope you ask enough questions to make things easier for you. I think it's too bad that I had to work that hard to get the answer, but I am glad I had the persistence to get it.

Carrieann