After the nice "tease" we had of Evan visiting home, we are cautiously optimistic that he will finally be discharged tomorrow!! I especially can't wait as I haven't went to visit him yesterday or today as I am run down with a serious cold :( Not fun. I am starting to feel a bit better this afternoon so hopefully the worst is over, but I am obviously scared that one of the other littles or the hubby is going to come down with the nasty bug!! I will be relieved if I am the only one that takes a hit ;) Back to Evan.... we had a frustrating weekend, feeling like we were once again not being heard and that no proactive progress was being made to get the lil guy home. The weekend events have been added to my "list" so that I can compose my nice "post" letter that hopefully someone will take to heart and possibly improve the experience for a family down the road (who better not be us!!!) Last night was Evan's first night off of the tpn (IV nutrition) and they allowed him to eat what he could of a 100cc bottle and then they would put the remainder in through a NG tube. This way his gut is getting to process all of the nutrition he needs and will tell us if he can handle it. He has done good so far, he did through up one time last night but they don't seem concerned. They want him to stay again tonight and if he continues to do well and can show a weight gain tomorrow morning he will be free to come home!! We know all to well about the "weight gain" game from the NICU so dad will be prepared once again with a lead weight to put in his diaper, haHA!
Evan is going to come home with the NG tube in place so we will receive a crash course in nursing 101. We will be responsible for making sure the tube is correctly placed in his belly and give him whatever portion of the bottle he does not take. We have already been prepped to take care of ostomey bag and are confident in my skills (Dad hasn't went there yet, and I'm not pushing it since it is not permanent). The plan is for Evan to have an outpatient next week with his surgeon and if all looks good he will schedule his "take down" surgery for the following week to put him all back together! We hope that the hospital recovery time is MUCH shorter for this and are told it will be if the surgery is successful.
Good luck! You'll be able to handle the ostemy bag! We meet with our sons surgeon on May 18! Maybe they'll have surgery around the same time!
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