Cohen update with long explanation: A few weeks ago Cohen developed two areas of pneumatosis in his bowel. This resulted in a few days stay in the CICU to monitor him closely to make sure his bowel didnt rupture. Thankfully he avoided surgery and it appeared that his bowel was getting better. The plan was to rest his gut with no feeds for 2 weeks. During this time he was getting IV nutrition (TPN). The TPN isnt new for us; hes been on it since last January. Last week slow feeds were restarted. After a few days his belly started to show us signs he wasnt ready. It was distended and his G tube site was leaking. Feeds were stopped until Monday. He was super hungry so he was allowed 3 bottles of 10cc a day. On Monday we learned Cohen has delayed gastric emptying. Basically his stomach doesnt empty as quickly as it should. So his feeds into his G tube were just building up into his stomach and thats why his belly was distended and his G tube was leaking. On Tuesday Cohen had a GJ tube placed. In the past he tolerated feeds in his NJ (below his stomach) so the hope was a GJ would help him. Within a few hours he was fussy and not himself. This morning he was crying a lot, which isnt normal for our Cohen, and he was gagging more often. His amazing GI doctor and I discussed a plan for attempting to push through and hope Cohens belly adjusts. Within minutes of this conversation Cohen showed us he didnt like that plan. He was screaming and gagging even more. So his feeds were stopped. Since then I have gotten a few smiles and hes actually sleeping now!!! New plan. Cohen will remain off of feeds for a few weeks. Hopefully total gut rest will give his belly time to fully heal. We will also be exploring options at other hospitals that specialize in kids with gut issues. For now we wait. Im hopeful within a day or so happy Cohen will return. We are trying hard not to be discouraged, but its natural to feel a little bummed. Thanks for the support and prayers.
Posted on: Wed, 10 Dec 2014 17:21:57 +0000
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