Tuesday, November 28, 2006

Off to the Peditrician again. This was suppose to be a quick visit to go over the results of the tests that were done on James while in the hospital. But as usual, I arrived with a long list of questions and concerns.

The most important thing we tackled today was the Echo. I explained to our Ped exactly what had happened and my conversation with the Cardiology nurse. She immediately told me that we were told nonsense that we absolutely had to see the Cardiologist first. She also told me that she agreed with me that an Echo was absolutely necessary on James. It being almost 5 o’clock she asked if I could wait while she tried to catch Cardiology before they left for the day. Not ten minutes later she was back, Echo in the works of being organized. Cardiology is able to do it but it comes down to whether the Anesthetist would have enough time, especially considering there was no backup Anesthetist on for tomorrow (which also means that if they are needed in labour and delivery, we’d be cancelled). We have a 50/50 chance of it getting done ... all that in a 5-10 minutes phone call ... and how long did I spend on the phone getting nowhere??

The other important issue we dealt with was the fact that I was not able to get a hold of her when I needed her ... and this is not the first time this has happened. I can’t work on a Tuesday to Tuesday basis; James doesn’t cooperate with such a schedule. I need to have some way to contact her in between if absolutely necessary, and I can’t seem to get anywhere with her receptionists ... the only thing they have learned over the past few months is not to tell me to contact my Family Doctor. That used to be their standard answer. I’m not sure if they stopped because one time I became extremely upset (and let them know) when they told me this, or because they finally clued in that James is beyond our family doctor. I have no desire to get a new Ped. I know what I have now, I really like her, she knows and understands James (as best is possible all considering), I would hate to start over at this point. She gave me two options:
#1. She would give me her home e-mail address so I have a way of contacting her;
#2. She would refer me to another Ped - no hard feelings.
We decided to go with #1, as I really don’t want a new doctor, just one that’s available more then one day a week.

Another thing we did discuss was getting a PIC Line for James. This is a permanent IV line. Someone had mentioned this too us and I had looked into it, but felt that maybe James wasn’t quite at the stage for this yet. As well, I couldn’t find very much information on the risks involved. What’s nice about our Ped is that we’re usually thinking along the same line. As soon as I asked about it she said she was going to suggest he get one. Instead of a PIC Line she suggests a PORT. A PIC Line goes in the arm, up the arm and sits just above the heart. A Port is put in the chest and is buried under the skin. Since I got home I’ve done a bit of research on the PORT and have mixed feelings about it. This is more invasive, but yet longer lasting. Is James really at the stage where he needs this?? We will have to meet with the Surgeon about this, so we’ll see what he says about it.

On another note. James is not doing very well today. Yesterday he started to have fevers. Today they’ve become even worse. While at the Peds he spiked up to 40C, but mostly he’s been hanging around the 38-39C with his breathing in the 54-66bpm area, borderline of hospital. The questions begin again. Is it just another virus? The fevers began 36 hours after he came off the antibiotics, is he still fighting the same thing? Our Ped agreed that he’s border line right now. For now he’s okay at home so we’ll see how he does as it’s hard for the doctors to make any calls yet since it’s only been two days and could just be something he picked up in the hospital. Interestingly, when I went to do his night feed at 10:30 he woke up and his temperature was 34.8C. He was cold and clammy, irritable and clingy. I sat with him for a while and eventually he went back to sleep. If his fevers persist all our work to coordinate tomorrow will be in vain as they will not do the procedure if he is not well.