We had foolishly become optimistic that we would make progress this weekend. We were hoping for clear fluids (ie pedialyte) to begin today per the attending Doctor, but somewhere along the line the decision was made not to do so and we are not quite sure why. The resident told the nurse that based on the fellow's assessment they will re-evaluate day to day. For some reason they do not round like other services, at least not with us. Maybe because we have to be on another unit because of Elias ventilator dependency? We saw the attending surgeon, Dr Levitt on Tuesday afternoon, but not again until Friday afternoon. The fellow has been coming in at 6am so there is not much discussion. We do not see anyone else unless we specifically demand it, which is absurd. Especially since the hospital prides itself on Family Centered Care.
This is day 7 of the admission and it has been 147 hours ( as of the time of this post) since Elias has had anything to eat. Our best guess on the reason to withhold the liquids still is there remains some distension in his stomach, but that is a guess. I won't tell you my other considered reason. If you want to know feel free to email me and I'll be happy to share. What little calories Elias is getting through the IV fluid is going towards the healing process. It is insane how much the child has laid still and slept, even if fitfully. He has zero energy.
Elias did show more life for a little bit this morning but it was sadly short lived. There was a tiny smile and a few fishy kisses. He also tried to sit up a few times, succeeding once and then turning pale white and literally crashing. Poor little guy. So we will just sit here again today and maybe tomorrow. If they are unable to progress on Monday then TPN and Lipids will be considered. We are hoping it doesn't come to that. While it provides needed nutrition when there is no other way it is very hard on the body. Thank you as always for your continued prayers and support. We will update as things change.
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