Well it finally happened, the day I have dreaded - Aly had a temperature of 38.4 last night and I had to page her oncologist. They told us on the day that she was diagnosed, that 38 is the magic number and even issued us a hospital approved thermometer. We were informed that as soon she reaches a temperature of 38 or higher, we need to have the oncologist paged, regardless of day or time. Leave it to Aly to run a fever at 6:30pm on a Friday night - - when everyone has gone home for weekend - so I paged the Oncologist. I was impressed at how quickly I was connected to him - and after some brief discussion we headed in truck to KGH ( there was a bit more drama during this time - but I will leave that part out - - thanks for being here Erin!)
So when we walked in emerg I was told to inform the triage nurse that we were "direct to peads" - this way the on-call pediatrician would see Aly and not the regular ER doctors. We were isolated for a very short period of time until they had a bed ready for her. Once she settled a couple of nurses came down to access her port and take some blood samples - - again, a whole lot of drama that I will leave out, the important parts is that they got the blood they needed. The two nurses that came down already knew Aly from her last admission to KGH and I am not sure about Aly, but I was definitely happy to see some familiar faces. They were already aware of how "pleasant" Aly can be ( not) so I didn't have to explain the impact that steroids were having on her. It wasn't until 10pm that we had some xrays done to ensure that she did not have any pneumonia in her lungs, as the Dr's were concerned about her breathing. Everything else seemed normal for Aly, however the main concerns were her rapid short breaths, increased heart rate and excessive sweating. Apparently those can be completely normal for a child on dexamethazone ( and that has gained 10lbs in 4 weeks), or it can be signs of pain and infection. With clear x-rays they were able to send us home. I feel bad for all the patients that were in the ward with Aly as she has quite the lungs and kept yelling - I wanna go home, I wanna go home, HOME, HOME - home NOW!!! ( all night long) It's a good thing she is cute because when they all saw her leave, they just tilted their heads to the side and gave her a smile.
It was an exhausting night but I definitely learned a few lessons.
I need to know her blood levels from her most recent visits - everyone kept asking me what her white blood count was etc. At least I knew that she was not neutropenic and her levels were good - - I just didn't know the number. I also have to keep track of her bowel movements and pay closer attention. It's amazing how important your pee/poop frequency can determine your overall health.
Well its 10:28am on Saturday morning and she is still asleep. When we finally got home last night she was wide awake so she stayed up a bit with daddy and watched TV in the living room before hitting the hay at almost 2am. I bet she is as exhausted as we are....... And so begins the longest week ever -- so much happening this week. Not only does she have her bone marrow and spinal tap on Thursday, it can't happen until 12 noon and she cannot have any food / drink before the procedure as they have to sedate her. WOW - they have no idea how ridiculously hard that will be. Aly eats non-stop from the moment that she wakes up and when I tell her she can't have anything - she will lose her mind. Perhaps I will keep her up on Wednesday until 2am again, so she will sleep in 11am - then I only have to distract her for an hour :) Fingers crossed......
Fingers crossed Audrey :) - Justin.
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