CT Completed

On Wednesday when the doctor said they did not want to wait until Monday to do a CT Scan, but wanted us to come to Emerge, we spent some time debating whether it was really that necessary to come right away, finding that his condition did not warrant an Emerge visit and we would feel silly coming to Emerge with a relatively stable child. Well it seems our decision to follow Doc’s instruction was wise.

James’ oxygen requirements have again increased and he is now requiring 2-2½ L; at one point yesterday they had him on 3 L. Emerge did not think at all that we were out of place coming and we almost felt like they were overreacting, mostly because we are used to dealing with him and know how to react to his different health states. James himself is much more mellow, not having a real desire to get up and play. He has spent the last two days in his bed and is completely content there with a few toys and the TV. Although he usually likes baths we, couldn’t convince him to get out of bed to take a bath this morning....he just wants to lay in his bed. Although lacking energy he isn’t so sick that he complains or wants to be entertained, but plays well on his own.

The CT Scan was done this afternoon. We’re so thankful that they have good enough equipment here to do unsedated CT’s and we don’t have to go through the whole process we used to with sedations each time. Radiology isn’t always happy about it as he cries during the process making it hard to get a good picture, but each time they’ve managed to get a good enough picture in the end.

By the end of yesterday it became obvious that they were planning to do a lavage regardless of what the CT showed. Clinically, James is deteriorating and is bad enough that they can no longer allow him to go home. Yesterdays x-ray showed that James looked worse, and so were actually surprised at his CT Scan today. They reviewed it with two radiologist: one felt today’s looked the same as last time, the other felt it looked worse. The Lung Specialist felt it looked a bit worse, but not as bad as she expected. James’ LDH levels, which had been getting better, have suddenly gone back in the other direction, and yesterdays blood gas levels were not good either. All this indicates that we are not making progress in the right direction with his current treatment and a new approach is needed. If we wait too long he will be at a much greater risk of not tolerating the procedure, and so the wheels are rolling to line up a lavage on Monday.

Yesterday we met with anesthetics and genetics to prepare for Monday. At this point the doctors have their team organized and an ICU bed reserved (just in case) so that everything is ready to go ahead with the procedure. O.R. has James on the list but we won’t get an actual time until Monday. With the priority they placed on the order, they are pretty confident it will go through Monday, but there’s still the chance that greater emergencies will come up that will bump us to another day.

While doing the Lavage, they sending some of the surfactant that is taken from James’ lungs to a scientist who has been doing research on PAP and different treatment options for this disease. They will use the macrophages (cells) from this and do various tests to see how they react to GM-CSF and other treatments. From this they hope to get some indication of whether the GM-CSF treatment was actually effecting the cells and working or whether another treatment might work better (more trials). Once again these are trials and they won’t know for sure but are hoping to get some indication on how to carry on with treatment after the Lavage.

Although there still remain risks with doing the Partial Lavage, the doctors are confident that things will go well and that James will make it through okay and recuperate quickly. They are still saying that he will likely be able to go home after a couple days, and we hope they are right.