Wednesday, November 29, 2006 - Disappointment

Home again after another long day, especially for James. A long and somewhat disappointing day, but not a completely disappointing day.

James struggled with fevers throughout the morning and was not completely happy. His fevers were not as bad as they have been so I carried on with the process of not feeding him. Rebecca thought it great fun to hide while she ate her snack. Our Ped had said that even if he wasn’t well to still go in with him. They would determine if they could go ahead, as well they could assess him and determine whether he needs to go to Emerge.

James’ procedure was set for 2pm and we had to be there at 12:30pm. We met Rob when we got there and he then took Rebecca home on the bus - a great treat for her, the girls always love going for a ride on the city bus. Unfortunately James’ fever began to climb as we waited. Not having a nap didn’t help, as well I had not given him any Tylenol all morning as I did not know if it was allowed. I know for next time that Tylenol is okay, but not Ibuprofen.

Every person I seen I had to question if the Echo had been booked. Our Ped had called in the morning to let us know that she had been chasing after things during the morning and getting it coordinated, but it still hinged on the anesthetist. My questioning also brought to realization that Surgery was not booked to be there for his G-tube and there was no indication that they were coming. All this after they confirmed with me last week that it was all a-go. In the end all the coordinating possible would not have helped as they called off the procedure because of his fever. They felt it was too much of a risk because we don’t know what’s setting off the fevers and since they are doing a biopsy there will be slight bleeding inside which can do more damage if he had an infection in his blood. They did not feel that this procedure would really help to explain the fevers in any way and was not that important to have done immediately.

BUT ...there is some positive news. They did feel that the Echo might provide further information and that it was important enough to do. So they proceeded to make arrangement to have it done without a sedation with the hope that James would cooperate and lay still. James has always been a very cooperative boy and he did not fail us this time. He lay still for most of the Echo but near the end he had enough, he had not had a nap, he had a fever and did not feel well, and he didn’t like the thing so close to his chin/face. Hopefully they got enough to give us an indication if there is anything to be concerned about. We continue to pray that we will get a positive report back and not have to add one more ailment to James’ long list.

The GI doctor said that she would do her best to make sure that James endoscopy will be re-booked as soon as possible. The current waiting list is 4 months and we will not wait that long. Although we do not think that this scope will make a huge change in James’ treatment, we do know that with James nothing goes the way we expect and so we would like to have this done to truly know what we are up against when it comes to the colitis and inflammation. Hopefully they hold true to their word about having it done soon ... we know all to much about taking the doctors word for it. We have to call them back once we know what’s going on with James, either when the fevers settle or when he ends up in hospital, which gives them much more flexibility on the time they can do the scope.

Once again James’ fever has dropped down this time to 35.1 when I checked him at 9:30. When I talked to Our Ped earlier today she said that sometimes this can happen with infections. Time will tell, we must try to be patient ...sometimes easier said then done!! :)