Peds Appointment

We were off to the pediatrician today with the hopes of getting some better information on what's going on with James ... I'm not sure that we really accomplished all that much.

I really like my pediatrician, she's excellent at pursuing things and trying to get things together ... and I know that if she's struggling to get things done than I would be absolutely, totally, frustrated by now if I had to do all the chasing. I also know that if I need things done that when all possible to go to her to make things roll faster or the way we want.

Our pediatrician had been unable to get answers back from our Lung Specialist. I think she also had some issues with how he said they were going to do organize their tests with everything else, and coordinate it all, but in the meantime he has not done anything. I guess he thinks these things happen magically. She has now taken the reigns in her hands to make sure that things get organized. She did manage to speak to our GI doctor (just as I arrived) who is going to try to organize the bronchoscopy and CT Scan at the same time as the endoscopy, as well he will get the PH Probe test booked. She did say we may have difficulty getting the CT Scan done at the same time as the endoscopy and bronchoscopy because it is sometimes difficult to coordinate things in different departments when someone is under anesthetic ... but they will try.

It has now been almost a week since we took James off his nighttime feeds again. The first two days we tried to give him all of the normal amount during the day. By the end of day two we seen signs that this was not working at all: his belly became huge, we seen mucas and blood in his stools again and he was still waking at nights. So we had to stop with that idea and instead we put him back on his regular schedule minus the night feed. This means that once again he is not getting his proper daily requirements ... but we have had 3 nights of complete rest, not a peep from the boy!! Since it may be a bit before the PH Probe tests will be done, they (GI and Ped) felt it was a good idea to try James on a reflux medication as the symptoms are certainly leaning in that direction. She prescribe Losec, an acid reducing medication, for him to try and take once a day, he will need to come off the medication about 3-5 days before he has any reflux related tests done. James recent blood work also shows that even when he is not getting full feeds his Ammonia levels (the most crucial thing to look at when checking James) are in good range, so we do not need to be immediately concerned about the lack of full feeds, but we certainly can't keep doing this for long as he did lose a few ounces.

With regards to James' blood work and the things she could not explain last time ... she could not explain this time either, as she has not been able to get ahold of the Lung Specialist (ya, him again...anyone surprised anymore?) to get a better idea of what he was looking for and how he would like to proceed. So we have to keep waiting for more answers on that.

On the positive side ... we haven't seen fevers lately, James temperature has been pretty steady around the 37.1 to 37.3 ... higher then he used to be ... but more like "normal" people.

We have to go back again in a couple weeks to make sure that everything is getting done for his test date and hopefully to give us more information about what they want to do with regards to his blood results.

And who would of thought it would be so hard to get some reflux medication?? Turns out there are only two places that will do this medication as it normally only comes in capsules. In order to have it made into an oral suspension that I can feed through his G-tube I had to go to the Day/Night Pharmacy where they actually have a technician who can make this type of stuff. Generally they require 3-5 days notice to make such prescriptions, but she said she would have it ready for us tomorrow ... good thing because our pediatrician said to give it to him for 3 days to give it a chance to start working ... and THEN to start him back on the night feeds. Hopefully it works!! :)