Today was interesting to say the least. Mike, and the nurse took Jude into the Pediatrician to see what his assessment was. He checked over Jude very carefully, and said so far Jude sounded good. He said he heard some "congestion", but as of right now he is going to call it allergies. Mike said that the pediatrician seemed to understand this time how serious Jude' s situation can be. He said that as usual Jude is never easy, and that as of right now Jude isn't presenting with anything serious, but he understands that can change very quickly. He said that with the yellow throw up, he really believes that Jude IS aspirating on his saliva, and probably the vomit, but he cannot treat it until presentation. This is understandable, but so frustrating. When Mike called to deliver the diagnosis to me I was so frustrated. Mike said "Do you just want him to be sick", which made me so angry. We both calmed down, and Mike called me back to tell me what he meant. What he meant is that he wonders if it isn't easier that Jude present with a major infection initially so we will immediately know how to treat him vs playing the guessing game. He was right, it would be easier.
After I talked to Mike regarding the pediatrician the surgeon's office called. To my surprise they explained they wanted to do the surgery next week, with the fundo. I said, "but I wasn't calling for that, I was just calling to find out information on the fundo". She explained that the doctor really feels this is necessary, and he wants to get Jude's surgery done asap. I understood what she meant. He also believes Jude is aspirating, and we need to do this surgery prior to permanent lung damage. You want my honest opinion? I think the streaks they keep seeing on the X ray of Jude's lungs is already lung damage. Although, it's not affecting his breathing or pulse ox, so it's good we caught it now.
There is a lot of controversy over the fundo, and honestly I am just human. I have listened to everyone's advice. We have spread out the feeds, and slowed them down, but it hasn't helped. Someday's Jude keeps down his food, somedays' he doesn't. Someday's it's a sneeze that triggers the vomit, somedays it's just a gag reflex from saliva. Point is, from what the nurse is saying, it's not from a full belly. Jude can smile, he can laugh, but he cannot sit, walk, talk, or use his limbs correctly. I think he will in time, but right now I can understand why they are concerned about Jude's aspiration. Jude's Schizencephaly is rare, and well......and normally kids with this issue can present with various infection (for example the CDIF). We just have to make the best possible decision we can for Jude, and we think this is the right one. The surgery is correctly set for next Wed, but we all know how that can change. We pray, and hope we are making the right decision. We just want the best for Jude.
We have been told to watch Jude carefully until then, and we will. We are staying positive, and believe Jude will come through all this with flying colors. I believe the tube will make our lives easier, and Jude's too. Again, thanks for everyone's advice, and continued thoughts, and prayers.