Up and Down

Well it's been a couple days since I last reported. Not much activity happened during this time. They continue to try and drop the level of oxygen that James receives. The amount he receives is measured in litres/mls. Upon arriving on the Ward he was at 1 litre, this was increased at one point because he was having difficulty. But on Saturday and Sunday we were working downwards, working in slow increments to bring him off of the nose prongs. Sunday we started at 200ml and overnight were able to get down to 150ml. Unfortunately this afternoon we had a setback when we decided to try and let him test the limits. I asked for an extension on his tubing so he would be able to sit on the cot and from there look out the window to the cars down below. Well after 15 minutes of bouncing around in pure glee on the cot his SATs dropped back into the high 80's/low 90's. For some reason he ended up going way back up to 3/4 litre before we could stabalize the SATs again. James always does well while sleeping and so tonight we will slowing wean him back down again ... hopefully getting him back to 150 ml quicker then it took the last time to get him there. So at this time it's an up and down battle of working him off oxygen. We were not surpirsed that the extra activity set him back. Although we seen a setback when he became active we need to see this to get a realistic picture ... it would not be wise to have him sitting quietly at the hospital only to get home, without monitors, and find him ill again because his body can't handle normal activity.

Today we starting "hounding" the team on the many questions surround this episode and what could be going on with James. Until now we have sat rather quietly waiting for him to stabalize, now we are working harder for answers. It is firmly believed by all that this is a result of reflux/aspiration. But we do not want to leave on assumptions, we want evidence, so that we are not back again two weeks from now going through the same issues again. We have layed our questioned regarding the reflux/aspiration before them and our GI Doctor is suppose to come and assess ... so far that has not happened.

We have also requested further research into his heart issues and why his heart rate remains so high, even though he seems so much more stable. Some ideas were given today, as well as an ECG was done. More blood work was done as the doctor thought maybe it is just as simple as being anemia. We find this highly unlikely, considering the amount of blood work that has been done on him in the last year, by now they would of caught something like that ... but all part of the ruling out/diagnosing process.

We're working on different G-tube feeding changes, which could help with the reflux/aspiration ... but the library is closing and so I'll have to save that for another time.