ooh child…

Well, we have a new GI doc this week, and she was pretty clear that the plan was to do the G-tube/Nissen.  She said that the cardiovascular surgeon does not want her to keep the NJ tube as an alternative feeding method–so that does not appear to be an option any more.  She seems to be part of the conservative camp we were told about, as she thinks Sophia should not drink anything orally until she can have solid foods, or passes a swallow test in another month or so.  Other docs say she can drink thickened milk and just use the G-tube for back-up/meds, etc.  This might get to be an issue for the future, but I guess we’ll address that when the time is right.  Unfortunately, we read today that with kids who risk aspirating, you need to avoid fatty foods that can really harm the lungs (of course, that means no Ben and Jerry’s until she passes the swallow test).  She also wanted to consult with Neurology again to see if they could respond to the general tone issues, which means Sophia will get to see one of her favorite docs, D again, yeah!.  

 

Pulmonary came in to consult this afternoon.  They are trying to address the issue of the extra CO2 in her blood.  She could be compensating for the higher bicarbonate that is a result of her Lasix (diuretic)–so they might change those around.  There is apparently no way to know whether her current lung issues are related to aspiration, an infection, or both until they can get a better look during surgery.  What they’ll simply say is that her lungs are currently abnormal. They ordered a few respiratory treatments to help with her stuffiness and need for air flow–the “BDs” again (bronchial drainage)–what we thought initially were referred to as “beatings”–a nebulizer medicine to dry out the secretions in her mouth and a steroid for her lungs.  They want to get her lungs good and healthy in preparation for the G-tube/Nissen surgery.  This doctor really wants her to have the surgery too, to make sure her lungs stay healthy and she doesn’t have long term complications from aspiration.  

 

We have been really resistant to the tube idea since it really seems like she was eating well.  But, it appears that it will be the best for her overall health and development.  The sooner she can start growing and getting stronger, the sooner some of these muscles can develop better.  Surgery will likely be sometime next week with a 3 to 4 day recovery time.  We really hope to be home before her next heart surgery…