Another Week

Another week gone by, the holidays are done and it’s back to the old routine tomorrow. I’m going to miss being able to sleep in and going through the day without constantly minding the clock, but at the same time it will be good to have routine back again.

It was a busy week again, nothing unusual, just life. Monday we continued to tackle the cleaning job, finally making visible progress on the laundry room and storage room. Rob spent time putting up different shelves and hooks, etc to make it much more organized. I’m so excited now to be able to walk through the laundry room without having to worry about what I’m going to trip over ... and I can actually get into the storage room now ... did you know there was a floor in there?? Now with all the extra shelves I have no excuse for it to become such a disaster again. I must give all credit to Rob as I spent most of the cleaning spree soothing, holding or comforting James. He has not had a very easy time the last week or so, and I did not make it any easier by constantly trying to shoe him away. Rob went back to school on Wednesday and I decided to start my holidays then. The next few days were spent visiting with friends and family, relaxing and giving James his much needed cuddle times. It was refreshing!!

James made it through the weekend, and the whole week. We are now into Day 11 of unexplained fevers. This episode is different then other episodes we have gone through. Normally James’ temperature slowly rises into the 38's and then stays there with spikes into the 40's. His lungs cannot handle this, he struggles to breath and after 4-5 days he sort of "collapses" and it’s time to take him in. This time we see him going in and out of fevers and no 40's this time. He drops into the 36 area for a while, then creeps back up into the 38's, hitting 39 about once a day and then back down again. Usually between 9:30pm -11pm he drops down to low 35's, by 4am he has a fever again at 8am he wakes back to normal around 36.5. Daytime is inconsistent, up and down in the 37-38's.

We have not seen any sign of sickness. He has a clear running nose at times, a few times we’ve seen some green coming from it ... but mostly clear and not very much. We have not heard any more coughs or any sign of a cold. A couple of times throughout the week we questioned whether this was all just an ear infection or something of that assort. One night he did continue to tug on his ear, but that was after 5 days of fever. We did not see it again the next day and only occasionally see him tug on it now. This randomness could also be brought on by the fact that I have been faithfully putting mineral oil in his ears ever since the one night I suspected it was his ears. There was no point taking him to the doctor as I do not want him on antibiotics again and he always has too much wax for them to even be able to tell if he has an ear infection. So first I need to loosen up the wax and since I’ve been working on loosen up the wax we’ve never seen any obvious signs again that would suggest an ear infection. The only other sign of trouble we see is that his belly remains very distended, but his bowel movements are good and do not indicate that his colitis is acting up.

James’ breathing has been fine throughout this episode, likely due to the fact that he is not having continuous high fevers. Even when he does spike we do not hear the laboured or extremely rapid breathing. I check him occasionally and he’s usually around the 45-55 bpm area, considering this is high I’m surprised we do not see him struggle more.

Another difference we see this time is that he is unhappy, clingy, and often miserable. We have always marveled at how he just keeps going as if nothing is bothering him when he has high temperatures ... this is certainly not the case this time around. He requires a lot of extra time and patience (as it’s usually when I’m the busiest).

James does not sleep well, still requiring us to lay down beside him when he goes down for nap or bedtime. How much this is attitude or insecurity we will determine once daily routine returns. As well, it is not uncommon for him to wake up once during the night (usually because of a fever spike) and needs someone to lay beside him to get him back to sleep. Last night we had an episode where he developed a funny cry and when I came to him he was not very responsive at first, he had a low temp again and seemed cold and clammy, almost like he went into some sort of "cold shock". It took a bit to get him settled again. He cried a similar cry a couple more times throughout the night but went back to sleep on his own ... and then slept in until 9:15 this morning.

On a good note, James weighed in at 10.56kg (23lbs 4oz) on Wednesday. He has not only caught up on his lost weight, but surpassed it. The key is to see if he will keep it on since his eating habits have diminished again and he just picks, occasionally eating,. Even his interest in ranch dressing, ketchup and imitation cheese have diminished. The last few days we had hoped that he might actually be getting better since he began to look healthier again (eyes less glazzed, bags under eyes gone, face looks fresher) and seemed a bit more creative in his play again, but his temperatures are not agreeing with his looks.

This week we see the surgeon regarding the PORT we hope to have put in. With these continuous fevers they will not be able to put a PORT in as it is too risky ... at the same time, if they are able to figure out the underlying cause of all these fevers then it’s possible we won’t need the PORT anymore. But for the time being we will move ahead with the idea. The most important appointment this week is with our Pediatrician on Thursday, if his fevers persist until then we are expecting that she will want to admit him again for further investigation as she is currently on call at the hospital and can take control of the investigations done.

So at this time ... we begin the week expecting to end it in the hospital ... unless we see some good changes inbetween now and then.