Monday, August 11, 2014

Monday Update

Oh man, what a day! We were here bright and early this morning gearing up for treatment and ran into a big hiccup. First, his heart rate was pretty high, so he had another EKG and Echogram to make sure heart looks good. Heart is good, just beating about 160/minute. A bit fast for their liking.

Pic: Jack sporting a pudding mustache earlier today.
Then as Jack was changing into some shorts around 10am, I noticed he had a pretty good patch of raised bumps on his thigh, a few on his knee and some around his groin area. I didn't see them there last night and this morning Jack was dressed quick like in the dark and popped in the car right before it was time to leave. That little rash patch caused quite the stir, we had three doctors checking it out and then a team from Infection Control to take a looksie at them. Labs were drawn and rash was swabbed and all came back negative for anything serious. The plan is to watch it through tomorrow and if it looks better, we get to go home until Thursday. The doctors want the cultures to grow for 48 hours to make sure it's nothing serious. His immune system is all out of wack and since we were out and about this weekend, who knows what he could have picked up. As of now, we don't know what has caused this little raised rash.

His weight is still down, lower again since last week. Which I have no idea how, he has been eating like a super star. It's very frustrating playing the roller coaster weight game. We never have enough time in-between treatments to put any weight on him. It's to the point where there isn't any more wiggle room for weight loss. There is talk about a NG tube again to help with a nutrition supplement. He has no idea about this and glad he doesn't read the blog. Sorry little dude. 

Physical therapy came in today and worked with Jack. They did some stretches, range of motion exercises and some standing and sitting. Jack did good and didn't give the lady to much flack. :) 

Also, we asked that a Child Psychologist came in to talk to Jack. He's been having some increased anxiety since starting the Immuneotherapy. It's been a long road, almost a year now of being sick, poked and going through this whole shebang of treatment. Although he has been amazing throughout this, there is only so much a seven year old can handle. Hopefully we can get him back to being happy, somewhat carefree and whistling.

On a side note, the moon looked pretty cool this evening from our room. It was the highlight of our crazy day!

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