Sigh!

Yesterday James began to cough and have a clear runny nose. This was of no concern, as he did this last time after his bronchoscopy as well, so we are assuming it is from that. But unfortunately it seems to be having an effect on his SAT levels. At nap yesterday he only SATed 90-91% and after a short LOA yesterday afternoon he came back SATing the same. Overnight he hung in that area, continously dropping into the 80's. At one point they were going to put him back on oxygen, but I asked to just try respositioning a few more times ... we made it through the night, but his levels were not good first thing this morning. They managed to pick up after an hour or so of being awake and off we went to play. Unfortunately playing drained him. I was getting ready to pack up for a nice long LOA since most of our doctor stuff got finalized quickly this morning ... and thought I should do a quick SAT check before we left. He was SATing 88/89% ... so much for going home. James has come to expect these trips home as well, so it's difficult to explain to him that he needs to stay. Possibly if he picks up enough after his nap we might be able to leave, but probably not a good idea since we know activity is effecting him too much today ... sigh ... mom has come to expect those LOA's too!! :(

Things seem to move so slow around here. A few quotes came back on the monitors we are waiting for ... but there was quite a range in the prices, so the quotes have been sent to a Tech to review and let us know if the cheaper one is adviseable ... otherwise we're looking at quite a bit more then we originally thought they would be! :( If we ever get to the actual ordering part it still takes two weeks for the machine to come in ... and we can't leave hospital until James is SATing regularly in the 90's .... sigh ... I want to go home!! :(

We are scheduled for a GJ tube on Thursday at 1pm. Considering it took 3 days to get that appointment I'm sure hoping that this thing is going to stay in long as we can expect hospital stays whenever it comes out ... sigh ... :( Since it's rather iffy whether James would actually lay still for the procedure we now have to sedate him again .... just lightly this time but still another IV line into his poor scarred veins ... sigh ... poor guy!! :(

They have decided to put James on antibiotics for the bacterial infection in his lungs. This will be a three week long treatment ... sigh ... hope his bowels, diarhea and bum can handle that!! :(

So ... if everything went really well and suddenly we had really good consistent SATs the earliest we will get out of here is Friday .... sigh ... did I say I want to go home!! :(

But after all those sighs ... we're managing ... just tired of it all and really wish we could go back to "normal" again. And I used to complain about 2-3 appointments a week. But as I spend more time here I see more people who have spent longer periods here then we ... we each have our ways of coping. As James is so complicated it is hard for us to leave him when we need to be there ourselves to discuss each thing with the doctors ... when a parent is not there or on top of things it takes even longer yet as there is no proper guidance. For some parents they are fine to let the doctors and nurses make all the decision ... James is complicated and nobody knows him like we do ... so it is hard to leave him in the hands of those who do not understand how everything ties together. But he's a trooper ...and really doesn't mind the hospital ... each night he is quite eager to go in the van back to the hospital ... for this we are thankful!!