Sunday, July 19, 2009

With it being a weekend not too much to report...not too much gets done. So this is the face I've had to look at most of the weekend. NOT so much fun....AT ALL. We are increasing Danny's meds, but that's just a band aid to the problem. I'm so going to be in GO mode tomorrow to get a strong game plan together to find the source of all this and on resolving it. I'm not one to sit and throw meds at him to make him feel better without finding and fixing the problem. This face is KILLING me! Danny was able to start his trials on the HME (nose) this weekend. Which has been going smoothly. He is already up to 2.5 hours twice a day. We are working him up to being on the HME all day and on the extra humidity just during the night.
As you can see both calm pictures are of him sleeping........but I'll take it, as long as he isn't crying.
Dan and Avrianna came to visit again's so nice to see them. I so can't wait to be out of here, enjoying the weather and enjoying being together as a family again. It's killing me to be away for so long. I wouldn't have it any other way, but I didn't sign up for this. With no end in sight, it can get frustrating. I miss them SO VERY MUCH!
We had a milestone today.....Dan pulled out his first trache and I put my first one in. Phew! It's full speed ahead from here with the trache now. YIPPEE!! I believe we might have found some nurses that are interested in home nursing for Danny. So when we are able to bust out of here that part of the process won't hold us up, I HOPE!
He is tolerating his feeds via g-tube but he's NO where close to the amount he requires. BUT he is getting food into his tummy and gut in hopes to kick start them to work properly. It's becoming a very slow process but a process that is in the works, WOOHOO. Ironically we've had to start up his babylax to get him to poo again, of course Danny lets throw another issue on the table. He was having approx 6 HUGE blow outs a day when we came in and is down to nothing for the last 3 days. Could that be the cause of his discomfort, Yeap. Could it be the stent they put in, YEAP. Could it be the stone in his kidney, Yeap. Could it be the once again subluxed right hip, Yeap. Could it be the dysautonomia, Yeap. My head is spinning!!!!!!!!

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