Nothing Happening

Well there isn’t anything new to report. At this time things are being lined up for Tuesday. We will actually be able to get an OR slot in advance this time, but that doesn’t really matter as we can always get bumped. And then there’s always the ICU issue, which means if there isn’t a bed again we would have to wait again. So nothings ever a guarantee as we have learned over the past couple years.

James is doing better spirit wise. He has more desire to get up and move around. He still likes the TV and will now actually sit up and bed and play with his toys (before he would only do so laying down and refused to sit). He also asks to go for a walk each day. Thankfully we were smart and brought a really long oxygen extension hose (which the hospital does not have), so we are able to hook him up and let him wander a bit more freely in the room and the hallway. This allows him to sit in the bay window at the end of the hall and watch the traffic … and being a true boy this is quite thrilling to him. He takes along his dinky cars and rides them up and down the window while he watches what goes on seven floors below him. After nap the new routine seems to be that I take him for a walk in the stroller. It being a bit of work to load everything and switch him over I’ve made a point of getting him used to the idea that this only happens once a day. He likes to sit down in the cafeteria area and watch the waterfalls and elevators. Once bored of that he enjoys to sit outside (weather permitting) and watch traffic again. Yesterday he asked to go back to his bed after an hour, he seems to know his limits.

Thankfully James oxygen requirements have not gotten any worse, although I believe a lot of this is due the the lesser amount of energy he uses. Whenever he does get somewhat active – even just walking around or having a bath – his SATs drop. We have been able to get him below 2L at times, usually at night, but once active he’s usually back up to 2.5L and even then his SATs are borderline.

And just in case we get bored, he thought he’d throw a new loop into things, developing some nasty diarrhea even for James who has always had loose stools. On top of that he complains his bum/bottom hurts all the time, but he actually doesn’t have a rash for once. A urine test today showed high protein and ph levels … so further testing has to be done to see if he’s brewing an infection or why there is such high acid levels. Since we are sitting here doing nothing we asked to see the GI Team. We have never been happy with the doctor we have at Mac, but knowing how hospital politics work realized we had to stick with him or our lives would just be more miserable. Now that we spend most of our hospital time in Toronto and not at Mac I’ve gone ahead and requested our GI Doctor be changed . So we’re hoping to have the team here evaluate him and maybe give us some input or advise on James’ colitis, continual diaper rash and yeast infection, and continual loose and mucasy stools. If we are happy with the team here we may just decide to stick it out. The more we can have tackled in Hamilton the better, but if we’re not getting the care that is needed there we must deal with the hassles of going to Toronto.

Well for nothing going on, I’ve manage to babble plenty. Until next time,