Sorry weve been super busy. Cadens doing well, but not drinking very well and not wanting to eat much. We think the thickener is messing with him. It took me two hours last night to get him to finish his meal, which we normally have to slow him down eating. When he drinks more he vomits but without drinking more hes getting more dehydrated. Also, the thickener is causing his ketones to drop, which is a problem for seizure control. Unfortunately right now we have to kindve weigh if its more important to avoid a rg-tube, or to avoid him getting dehydrated, not wanting to eat, and having to increase his seizure meds again. Before we decreased them he wanted to sleep all the time and was not very alert. Tomorrow there will be a meeting with a bunch of different specialists to talk about all the options and if theres anything else we can try. The g tube route is obviously something everyone wanted to avoid and I was really set against it, but when it comes to his quality of life, avoiding having to force him to eat and drink all day long and adding seizure meds with much more side effects and decreased alertness, if theres no more change, that seems to be the best option. Were still waiting and watching and havent given up trying other ways, but just preparing for if we have to go that route. He is still happy and active and alert, and I will let everyone know how the meeting goes tomorrow! Im not sure when it will be :)
Posted on: Mon, 01 Sep 2014 16:00:19 +0000
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