Good evening all!! What a couple of days we have had!!! Epic E had the IGT catheter and one of the JP drains removed yesterday. She was pretty irritable and not quite feeling herself so it took them awhile before they decided they were actually going to take her. They were worried that she might have been too sick to do the procedure, but after getting in touch with Dr Gerstle and discussing her recent stats they decided to go ahead. Before I went down to IGT though, I had a most wonderful surprise from Carolyn Wayne who had flown in for a conference here at Sick Kids!!! It was fantastic seeing you!! Thanks so much for the visit and for the photo of Dr Nasr!!! We miss our CHEO team so much!!! When I got down to IGT, Eleanor still hadnt gone in for the procedure and they were allowing one person to go in so Justin told me he thought it would be best if I went with her. So I got a gown on and a hair net and off we went to the room. It was the Image Guided Therapy room so there are about ten monitors, an xray machine and a table in the middle. E got strapped to that table and I got to be at her head and hold her hands. She did an amazing job!!! The catheter was kinked so it ended up taking longer than expected but she almost seemed more curious about all the goings on with the lights and xray rather than focusing on the tube being pulled out. Such a brave girl!! They ended up starting her on a new formula that is basically a purée of chicken and veggies, but comes in formula form... Eleanor doesnt seem to be handling it very well as she is all backed up and in a lot of pain (we are thinking it might be gas or cramps). We asked yesterday if we could try something different because she started acting off almost immediately after starting it, but the dietician insisted on trying it for at least 24 hours before making a decision to change it. Well she spent the night tossing and turning, vomiting and gagging and no one slept. Our nurse let us hold the feeds until we heard from the team. We talked to the fellow this morning about it but he said the dietician would be the best one to ask, but he did order an abdominal xray to see if they could see anything because E was still seeming pretty lethargic. They found that she is quite backed up, so they gave her a suppository which helped her to have a poop. She is still quite distended though and she is quite uncomfortable. We talked to the dietician again and she told us she didnt think the distension or constipation was caused by the formula so she was going to have her start on it again as well as adding a laxative. Justin and I thought was a silly thing to do rather than just trying a new formula, so we talked to the OT and our nurse and our nurse was able to get Dr Gerstle to come in and see E. At that point, I felt she was getting quite warm and at Justins suggestion of doing a rectal temp, it came up at 39.3 so yes, she had a fever. Dr Gerstle has now ordered no formula feeds until we figure everything out but she can still breastfeed and drink water. They think she might have sepsis or an infection in her gut so theyve started her on antibiotics even before getting all the results back. They have done a chest xray, bloodwork, added a new IV and an ultrasound. They spotted something on the xray which is why they ordered the ultrasound, which has now shown that there are four collections of fluid in her abdomen. At this point they are not thinking it is the tumour back and that it is just an infection, but it sure was a stressful half an hour or so watching the ultrasound!! When we talked to Dr Gerstle early last night we had discussed the potential for us to be discharged on Friday and have nutrition and OT follow us at CHEO so we could go home on Saturday!!!! But now with this potential infection business and the fluid collections, we wont be going anywhere just yet. As frustrating as that is, we know this is best for Eleanor!!! All medical business aside, we wanted to say a huge thank you to Laura Kuhn, Jordan Kuhn and your families for your thoughtful card and its contents, as well as Roys Florist for their donation too!! Thank you to Dan and Amanda Billard for your sweet card and its contents also!! We really appreciate it!! We also finally received the adorable headbands from Shelley Mousseau!! Thank you so much!!! We have used two already on Epic E just today and Ruby was wearing three at once today too and everyone loves them!!! :) We also got a shout out on the Sick Kids tv channel from A. LeBoo because we made him a tutu and he was wearing it today and telling everyone that his friends Ruby and Eleanor made it for him!! :) So for now they are monitoring Epic E closely and we are hoping for a better night!! Much love to everyone!! ~*XoX*~ Epic E and Family!!!
Posted on: Thu, 25 Sep 2014 00:22:03 +0000
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