Now What??

Today we were off to visit the surgeon. Rob decided to come with me for this visit as it was partly for information. I'm glad he did come so that we can both sit here and wonder what to do next.

Last hospilization we couldn't wait to have a PORT put in as we watched them poke and prod several times each day as they tried to get blood or start an IV. Poor guy was full of war wounds by the time we left. The last time they took blood they had to get it out of his head, supposedly much easier and less painful, but rather hard to watch.

Now we're not so sure. We left the appointment undecided, We'll have to weigh out the pros and cons. James is not a normal case for a PORT. Usually these are for patients who are going through chemo or need continuous IV for TPN, but they are also used on patients who have seizures and need a quick access. The doctor was not in favour of the idea, feeling 2-3 pokes each time was better then a PORT. I believe one of his big reasons for this was because of James' unexplained fevers. There is always a chance of infection when you put something foreign in a persons body, and so a PORT would just complicate the process of finding the source of his fevers, since the only sign that their is trouble in a PORT is....you guessed it, fevers. As well, at this time a PORT cannot be put in until James is feverless -it is far too risky when dealing directly with the blood stream. Another thing against James is his colitis. Those with bowel issues are more susceptible to infections with the PORT, because inflamed bowels can leak into the blood stream. Since he was not in favour with the idea, he stressed all the problems that can arise. With patients who have their blood stream accessed daily for months, the risk is lighter on the balance beam then for James, who "simply" has hard veins to find. To a certain extent this could be viewed as convenience over practicality. It all sounds complicated ... but then a G-tube sounded complicated and overwhelming at one point too, and now we think it's quite simple.

Having said all that, he gave us a consent form, which we took with and decided to discuss it again with our Ped on Thursday when we see her. She originally suggested it, so she can give us the more positive outlook and a feel on how important it would be. We're not sure what to think. It's hard watching them torture him everytime they take blood, but we don't want to subject him to any unneccessary invasive treatment. We're a bit stuck as well - they can't put it in if he continues to have fevers, and if they figure out what the cause of his continuous fevers is, then we may not need it anyways. So for now we'll sit on the fence and think, think, and think again.

James himself is actually doing quite well ... figures, someone must have told him he has an upcoming appointment that's going to make a difference. The highest temp he's had in the last 48hours is 38.0C , still a fever, but not too bad. Today he was himself again, playing and active and seemed fine, only sign that trouble is still there is the very distended belly. Now what?? Nothing is ever straight forward. We don't want to push for investigation and more torturing if it's unnecessary and it seems every time he's bad enough to push for something, an other thing comes up to interfer with investigations. We had really hoped that we could get him in hospital under the care of our Ped while she is taking her turn on the floor....it is so frustrating dealing with other doctors. For now ... wait to see what Thursday brings.