We got squeezed into the GI dr for today which was quick, much better than Feb. Although they made sure to take their sweet time getting to us (1.5 hr wait). It was perfect timing though b/c Isaiah had not been fed for over 2 hrs and he is usually fed hrly and his shirt was already soaked from his tube leaking. He has over 60cc of residuals (food left over from the last feed) this should be digested quickly but apparently is not and is one of the reasons he is leaking so much. We talked about the increased amount of retching so he prescribed another med to try for a longer period than we did the last. Funny thing is he said " I am going to list some meds and you are going to tell me if you tried them and what affect they had". Well after 6 meds, he kinda chuckled like "we are screwed" gotta love it. So we went back to one that we have tried but for a longer period. He also added another med that he used to be on to help with his motility. But the kicker was he was very concerned about the amount of leaking. He said that buttons as his can form scar tissue under it and the hole will never get smaller but it could get bigger which is an issue. So his suggestion was SURGERY. UGH. UGH. UGH.

He wanted me to consult with a surgeon he has worked with before with this specific issue. They will basically close up his current hole and put a new one in. I so don't want to put Isaiah through sugery. He has not has any procedures since he was 2 and I like to keep it that way. Unfortunately it sounds like my only option. Although it is not a major surgery it is still surgery. I guess I am so used just being in the hospital with Avery that it is really hard to switch kids.

Avery was not scheduled to see him but I asked some questions about him and he was glad to answer them. I asked him about deep oral suctioning vs. nasal suctioning and what would be the preference. He was not thrilled about deep oral suctioning especially with his reflux issues. He suggested we back off a bit b/c he heard his cough and it sounded irritated, I was in agreement with it. He is also concerned about aspiration b/c of the gaging. Avery is scheduled in Dec. for a swallow study so that will be interesting. I am just hoping that the sudafed kicks in and we can start giving it twice a day and back off of all of these invasive interventions it is so heartbreaking for him to have to go through it. He was pretty clear today and we started giving his zyrtec with it. Poor kid was just overtired from the day. It is so much work for the boys to be out a drs. all day now. Very exhausting for them. That's it for now.........