Family Meeting

Steve and I talked to the doctors today in regards to where do we go from here with Porter.  The waiting game continues and we're not getting off the hamster wheel anytime soon.  Porter is not doing a very good job at gaining weight and therefore is at a higher risk for complications with the surgery that we came here for than he would be if he were bigger.  His heart failure/disease seems to be holding steady for now so the consensus among the cardiology and transplant team here is to see if he can grow more before proceeding with surgery.  As long as the heart disease doesn't progress quickly he will be in a better place for surgery if he is bigger.  He's going to be 7 months old tomorrow and he's probably the size of a 3 month old.  

The good news is they don't believe him to have lung disease after all.  From looking at the CT scan of his lungs it appears that his lungs may just be underdeveloped and just have to grow more and get stronger.  

Porter is going to have the feeding tube removed from his nose and a G-tube placed in his stomach. We'll finally get to see all of his smiling face and boy is he smiling a lot these days!  He's not going to be eating enough food anytime soon to give him the nourishment he needs so this is a safer option for him going home.  If all goes well in the next few weeks with getting him off the last of the sedation medication, the g-tube surgery and transferring to a home vent we will be heading back to the PICU in NC for a SHORT stay and then HOME!  It's both exciting and scary to think that we will be going home.  

We need a double cheese burger (lean because of the heart failure) fries (baked) and some Guinness to fatten this kid up and get him to grow!!!


  • crsmith77

    it's so great to hear that his heart issues are stable and he doesn't have severe problems with his lungs. I'm happy to hear he may be going home in the not so distant future and he won't need the tube in his nose any longer! I would LOVE to see a photo of him after the tube removal :) My thoughts are with you guys.

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