Changes on the horizon

Met the pediatrician at Kaweah Delta this morning. He had to go see another patient and took time to see Liam. He is concerned over Liam's tachypnea but his lungs still sound clear with good breathe sounds. I was telling him that I think it was just the albuteral that Im allergic to it. Everytime I give Liam a treatment my symptoms get worse. The very last treatment I couldnt hardly breathe after and had hives. I told Dr Coverston that these red bumps showed up after we started the albuteral and that he didn't seem to breathe better after the treatments. Liams albuterol was switched back to xophenex but now nebulized and his QVAR was changed to pulmacirt, a stronger steriod preventative med. Hopefully these work and then his vommiting will stop. If not, then we'll have to take it from there. We can try new meds but theres only so many out there. The only other solution would be a surgical procedure where they open up the muscle conecting the stomach to the intestines with a shunt since he had slow motility. Surgeons said he might have to have this done if he was going to continue to vomit. I have hopes that the new breathing treatments will work. Theres no reason to think that they wouldn't. However I am thinking of putting Liam back on the ranitidine (antacid) because I dont think the other antacid ever worked for him. And I want to find a replacement for the Reglan since there are so many side effects and dangers to taking Reglan. Usually Id say "nows not the time to mess with meds" when he's sick but maybe now it the time. Obviously if somethings not working then we need to find something that will work instead of being discouraged by that one thing not working. Liam can handle his nightly continuos feed of 35mls per hour. We tried 8hrs of 43mls per hour today and it didnt work. Tomarrow we'll try the 9 hours of 41mls and hopefully that will work. If that doesnt work he will be on a continuos feed of 35mls per hour for 21hours a day leaving only 4 hours of not being fed via gtube. I hate that were having such a hard time finding things that work for Liam but I am feeling very obtimistic that there are still options out there and that we will find something. Yes I hate that we're going through this and yes I still want my "easy" button but I cant change things. I cant say Ill feel this way tomarrow or even the next day. Some days are harder than others like Im being crushed by the weight of the world. Other days nothing could bring me down. Is weird being on this roller coaster of emotional highs and lows. Im hoping for more days where I feel optimistic and simi-happy, these are days I can handle. I know its going to be a long journey, and my bags are packed (metaphorically speaking), I just hope I packed for everything.