The plan (for now)

After a couple of days of back and forth we have a plan for how we are going to treat the omphalocele. There is still a lot of ambiguity but the general plan has been put forward.

We are going to be doing the more conservative route of painting and waiting. Everyday someone on the surgical team comes and paints the open part of the omphalocele with benedine (or iodine) and then covers it with gauze and Kirkland brand plastic wrap. They will continue doing this until there is a leathery skin that grows over the sac. Once that happens, and she is independently feeding, we can go home to wait for the real skin to grow over the scab. We will be painting the wound ourselves at home with either home care help or outpatient help. Once the skin is grown in, they will fit her with a prosthetic that will remodel her liver and push the omph into Isabelle’s abdomen. The prosthetic is worn sparingly to ensure that it doesn’t cause breathing and intestinal concerns. Once they are happy with the contents in the belly they will do a closure surgery. The approximate timeline for all of this is 6-9 months if everything goes well.

Her feedings have been going really well. The surgeon today upped her feed from 5.9 ml every 4 hours to 9ml every 3 hours. If they keep upping the amount everyday like this, we will be attempting oral feeds in no time! It is great to have a plan now moving forward. I am still unsure about just using iodine for the painting, but we will just keep an eye on it and if the skin seems to take too long to grow I will bring it up again.

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“All this painting and waiting is hard work!”

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