Came in and talked with us yesterday, I was really expecting them, but I guess that is normal, they seem to come in at random appointments. The overall appointment went good yesterday, she brought her weight back up from when she was sick a few weeks ago, and and is eating wonderfully, but when I talk to transplant team about her DX I always get set back into reality that really no adult with MMIHS has made it into adulthood, and it's only been a few years that TPN has changed for the better as a long term solution. They always seem to push me to consider transplant without exactly coming out and saying it, but I just don't know how I feel about it, her quality of life is great right now, is this the perfect opportunity to do the transplant now despite the risks, will she be too sick later to even deal with it if we wait, and suffer from more complications, I just don't know... It's just one of those decisions I really don't want to make, and hope that no one will ever understand.
I know I am kind of going off on a tangent, but I seem to always get upset when I read about children who get a cold or have a sinus infection and parent's are devastated by it, I know I shouldn't get upset by it, but I could only dream that I could be so upset about a cold with my child, I mean a fever for Janessa means rushing to children's for days, watching her receive IV antibiotics, and risking her life, compared to a normal child who you just give tylenol to and they eventually get better. I know it may sound selfish but I wish people would shut up and just be thankful that their child is healthy! I know I might get some harsh hating reactions on this one, I shouldn't think this way but sometimes it's hard not to...
Back to the realm of Janessa, ICARE was talking about placing a GJ into her tummy to try and get some tube feeds into her intestines and see what happens! I am kind of excited about this idea, and hope it has some success with Janessa's feedings, it would be nice, but I am not going to get my hopes up because with MMIHS it's not something that is curable, and surly not anything with a great success rate in feeds... I'll let you know when that'll be scheduled for her...
December 9th Janessa goes to urology to have an ultrasound on her kidney's to see if everything is okay there, she hasn't been contracting any urine like she used to, it's been months so who knows what they will find, hopefully everything is alright, and there is no reflux!
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