The Neverending Questions

March Break is over and Marietta is back in school, with that comes routine again. The break was nice, but the routine is welcomed. The kids finished off the week with some small things like a trip to the library, spending their hard earned money at Dollarama, watching the bird show at the mall/plaza and then off to Grandpa and Grandma's for the weekend.

Well we can say that this is the longest stretch in the past year that James has managed to stay out of the hospital ... 3 months now. February was a good month, we were seeing some signs of trouble, but he was happy and healthy looking, active and busy with no more fevers. March seemed to bring in a new tone and it's slowly been downhill. And it just starts the ball rolling again for all those questions we never seem to get any answers to.

The sign of trouble that we seen during February was his stools, once again they were mucasy with occasional blood. So we have changed his formula, but the question of course remains of whether this is truly the problem. We are hoping. How long should it take to get an answer? Usually in a week or so you can begin to see signs of improvement, but unfortunately this time he's on antibiotics, which adds the next question. The last few days have been the worst, back to 6 dirty diarrhea diapers a day, mostly with mucas. Does this give us a negative answer? Not really since we have no way of knowing if it's the antibiotic. Although the dietician said to call after the weekend if I was having trouble, I'm thinking we still need to stick it out a bit longer ... but he's not done the antibiotics until next Wednesday.

I started James on a probiotic on Saturday. Didn't know it would be so confusing to figure out what to buy ... but I picked one out and are giving it a try. We're starting on a low dose and will slowly work it up. With everything else going on in his little body right now I'm not sure if we'll be able to tell the effect of it ... but they say it can't hurt, so no use waiting until things settle down.

We have begun to see fevers again, usually in the late afternoon and wee hours of the morning. What brought these on? James has been miserable for the last two weeks, clingy and crying, unhappy and not know what to do with himself ... this makes us think that whatever brought on the fevers has been adding up for some time. Yesterday he threw up out of the blue, no sign it was coming (usually we get a certain cry before hand) ... what's this related to?

James has learned a new word "ow" ... actually he already knew the word, he just seems to know how to apply it now. You would think this would help. He uses the word during the middle of the night when he's crying ... "ow" and points to his g-tube most of the time, but sometimes to his chest. He even used this word about 3 or 4 minutes before he threw up yesterday and that time pointed to his stomach. So what is he trying to tell me? Is his g-tube bothering him? it looks really good right now. Is it a general way of saying his stomach hurts? if so, is it a reaction to the antibiotic which can cause upset stomach?

One place he has never pointed when he says "ow" is to his ears ... but yet lately he's been pulling and digging in his ears to the point where he draws blood because he scratches it. He does it when he's half asleep and he does it during the day ... sometimes you can even hear water when he does it. Suddenly a new lightbulb goes on. He did this all the time when he was little and everytime I went to the doctor I asked her to check his ears and they were always fine, no infection, no eczema. But .... we now know that for the last few months he's had fluid behind his ears ... so how long has he had this problem? Is this fluid causing more trouble then we thought? Is this part of the reason he wakes at nights ... a common problem with fluid behind the ears. Just a few more questions to put into the equation. Today the dietician and Occupational Therapist were down and said that the waiting list is long to get in for tubes if they are needed and that we might want to start now and just pull out if it clears out in the summer ... it's next to impossible he would get them in before the warm weather. We were originally not in any hurry to push through another procedure, but maybe we'll have to rethink that idea.

And to add more questions ... we wonder how effective the Losec (reflux medication) is since we didn't see the same immediate effect when we put him back on it ... he was still waking during the nights. We haven't heard back from the Probe test yet to see what it said. Or was it effective and we were already starting into other problems that kept him waking up?

And the questions just carry on ... so please anyone, feel free to answer them for us!! :)

The good news is he continues to gain weight at a slow but good pace. He weighed in today at 10.82 kg (23lbs 13oz) and measured at 86cm (34 inches).