Good evening all!!! So another up and down day here at Sick Kids!!! Epic E had a pretty miserable start to her day, seeming unhappy and just not herself. There was a lot of in and out though through the night and early morning so it is quite possible she was just exhausted!!! We have asked that they try to coordinate vitals, meds and checks to be done all at the same time because as common sense as that may seem, it doesnt always happen and E is being disturbed every hour or two!! So they have written that in her care plan and we hope it is followed through :) On top of vitals, meds and pump checks, the ng tube is back in her nose because she is still losing weight, so thats another visit from the nurses to start and stop feeds. That seemed like a bit of a setback for us, but if it helps get our girl better, we are all about it!! The dietician discussed my milk supply and whether or not it is sufficient and that it is difficult to measure how much she is taking in which was frustrating because it seems to be the only thing E will take willingly and it helps comfort her, so to think about stopping or pumping so they can measure seems kind of silly. At this point they are going to leave it that we can still nurse as we wish though, so yay :) We are trying very hard to get E to take solids!! She is very interested in food, she just seems to be having some difficulty swallowing it!!! Cognitively she seems beyond purées, but physiologically her digestive system seems to be behind, which makes sense but makes our job a bit difficult. We will get there though!!! We have an OT helping us out too which is wonderful!! Tonight was our best night yet for having E swallow a few bites of food!! We also think she still might be guarding a little bit, perhaps remembering all he pressure that was in her belly for so long, so we shall be patient and let her lead us. Shes always been quite clear on stating her needs so Im sure this will be the same :) A great big thank you to Karen Robertson-Poirier and everyone who helped fundraise for a Vitamix to allow us to pack a bunch of nutrients and calorie dense foods into smoothies that Eleanor will hopefully take!!! That will definitely be helpful in getting our little lady to gain some weight!!! We appreciate it so much!!!!!! :) The plan right now is for the IGT catheter to come out tomorrow morning and possibly one of the JP drains, and potentially the other JP on Wednesday!!! This all depends on how she tolerates everything and that there are no spikes in fever or anything, but we are hopeful!!! :) There is even the potential that we can be discharged to RMH again and have her nutrition monitored by clinic visits, which would be amazing!!!!! For now well snuggle up in our hospital bed though and dream of home and all the wonderful things we will be doing soon enough!!!! Or maybe we will dream of A. LeBoo who came to visit again today!!! :) Thanks so much to everyone for being so amazing!!! Much love to everyone!!! ~*XoX*~ Epic E and Family!!!!
Posted on: Tue, 23 Sep 2014 02:13:24 +0000
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