Yes Lennon did not like some foods – usually those high in protein. I was always left wondering why he wouldn’t eat chicken nuggets, fish sticks, mac & cheese. In addition there are lot of veggies he stayed away from corn, peas, carrots and other ones. He has always been big into starches (potato and rice) and no he does not eat spaghetti either. It seems as though he always knew about the food that would make him ill – run by instinct – perhaps even a certain smell? I don’t know but it is pretty amazing that he ultimately knew what he could or could not eat. I think a big part of him not eating right now is that his body is going through this major adjustment. It’s a new him, and perhaps new feeling about self (physically and mentally?). If we think about what the ammonia has done before i.e. drive him crazy, make him irritable etc. the calmness might be kind of weird to him?
About the warm/cold feeling…I have ready somewhere that individuals with UCD will be cooler than normal as the liver is not able to function fully as there are enzymes missing. So my guess is now that he has a full-functioning liver and the enzymes have been replaced (?) he now has a normal body temp. For me that was just the neatest thing!!!
As far as for the water – the big issue was that he had been so full of fluid previously and they didn’t want him to “swell” again. In addition, too much water will lower your sodium (?), well this is the reason I was given. He now is drinking Breeze – similar to Kool-Aid just with nutritional elements.
Well, and so I am ending this with a positive note. Two of the draining tubes have been removed today and he was also been moved out of the PICU. He will require two shots a day for clodding issues, as well as his regular meds for the transplant (steroids, anti-rejection etc). So who knows by next week this time we truly could be home. Well, honestly all they have to do now is get his dosage correct and remove one more draining tube. Home for Christmas?!?!?!?!
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