Maybe I should wait to post this. Maybe my frusteration will wear off after a few days. But then again, I am inviting you on the ride to this new life with Baby D, so a watered down version of anything wouldn't exactly be fair, now would it?
About a month ago we got a call giving us the results of a biopsy D had done of his intestines. The nurse told us he has sucrase deficiency. That's it. Sucrase defieciency. Okay, what's that? So, after 4 long weeks of trying to find something on the internet, and crazy person calling the nurse and dietician, our appointment finally came around today. Sucrase is an enzyme that your intestines secretes that breaks down the sugar sucrose. If you lack the enzyme that breaks it down, it causes chronic diarrhea as well as other problems. In these past 4 weeks I have had all the sucrose taken out of Dominic's meds and supposidly breast milk doesn't have it in it. His diarrhea continues though. So, we are trying a medicine called Sucraid that replaced the lacking enzyme. Only one company makes it, and since the demand is low due to the relativly rare incidence of this disorder, they have complete monopoly over it. One bottle costs $6,000.00. That was not a type-o. Remember how I was griping about the eczema lotion that cost $500? That doesn't sound too bad now, ehh? So, we put in an application to get approved to take it. Today we were told Dominic is the youngest person in their clinic to ever take it, so he's a sort of experiment. Awesome.
After we saw the doc, we went in to see the dietician. I have been being told for months now that at his 6 month check up we would discuss giving him blenderized solid food through his g-button. I have been patient. After arguing about which fat to supplemet him on, a lot of eye rolling and head holding by the dietician, we agreed on canola oil. Then on to the amount he is to be fed. Again, another argument. Sorry if I don't feel comfortable when you tell me you reviewed his chart on Monday, since you just got him confused with another kid. Check it again please. Please. Finally, she reluctantly did. She seemed to be done with our visit when I said "and what about food?" She looked at me in a "are you serious woman" kind of way and said "oh I don't think the doctor will want to do that." I just stared at her, said nothing. She then got up and went and asked him. By george, he said it was okay, so again, another bit of attitude and we have a plan for a few weeks. He can not have any starchy or sweet veggies, so we are left with spinach, green beans, brocolli, and cauliflower. I only got the last two because I kept naming veggies until she agreed on some.
What is it with the dieticians at Cooks? I'm sorry, I know I should stop here, but I just can't. I am being very nice in the above paragraph. It got so bad I was about 1 second away from standing up and walking out. It takes alot for me to get mad. Having to advocate is one thing, but being treated like a crazy mom who bucks the system is another. We are not in middle school, save the eye rolling. You know what, I will make your professional career a living hell because I will not be a good little patient and feed my kid canned food. He is a person and people are meant to eat real food, not some hypoallergienic crap produced by pharmaceutical companies. I will just save her the trouble and switch dieticians now. The last thing I need in my life is some bitchy lady giving me a hard time about what food I can and can not give to my kid. Last I checked, I'm his mom.
Sorry for this, I'm just so mad! I will stop here because if not I will regret it.