Saturday, September 25, 2010

Pick a diagnosis, any diagnosis...

Did we treat Tripp for a Urinary Tract Infection- yes.  Do we know if he really had one- no.  Is he better now- no.  So now our brains are saying, "What if it IS C-Diff?"  I think that's the only explanation of why he's still in pain, still has diarrhea, still losing weight, and still NOT HIMSELF.  Seriously, from the day of his eye surgery- September 8- he has NOT sat by himself at all.  He's been in someone's arms- either in the rocking chair, or us standing up.  And don't you dare try and sit him on the ground to play with his toys- you would think he was being punished.  I just don't know if he's been sick and weak for so long that he can't snap out of it- or if something really yucky is going on. 

So with C-Diff, you have to test 3 different stools to really call it "negative."  So yesterday I brought 2 more stools to Dr. Defusco's office in Destrehan so that we could test and be SURE if it's C-Diff or not.  Meanwhile, he's starting Flagyl- and being treated for C-Diff.  We are running out of options- and honestly, I'm kind of starting to get a little worried.  So the Flagyl (Metronidazole) is what we are treating him with and it is 4xday for 10 days.  AHHHHHH.  Sorry.  But if you would SEE the amount of medicine this child is on- adding one more makes me cringe.  I split them up throughout the day, but he has about 10 syringes full in the morning and 4 at night.  It reminds me of where I used to work, with the elderly.  I used to give some of them about 20 pills in the morning.  Tripp is like a little old man!  

He's back on his blended diet.  When he went in for his eye surgery, he weighed about 20 lbs 14 oz. (Mind you, this is with ALL his bandages on)- and that's the most he's ever weighed.  About a week ago he had dropped to 19.4.  And last night he was 19.6.  So I hope and pray that he is started to gain the weight back- because he canNOT afford to lose anymore- he's already a little skinny midget.  I always joke with him and tell him that he's the "Biggest Midget I know." 

So he STILL hasn't gotten his shots, either.  That would just be torture right now.  But he's going on being about a month and a half behind.  I know he's not exposed to kids, or a lot of people at all... but it's still scary.  If he gets anything that's more serious than whatever he has right now- it's NOT going to be good.  Because whatever this is threw him for a loop.  

I have to say- after seeing what Tripp went through these past few weeks, the Bone Marrow Transplant has been running through my mind a little bit more.  It would be a really, really tough decision.  And I don't really know enough about it, or how we would go about it.  But I have to say that the thought has been there.  I can't help but wonder "what if?" But there is the "what if he doesn't make it through the transplant but I would've had 5 more years with him?" And the "what if I don't have much more time, but the transplant is our miracle we've been praying for?"  There's no easy way to make that decision.  I guess it will all come with time.  Meanwhile, I'd just like to do a little research and talk to the other parents who children have been through it.  I don't know if the thought is just crossing my mind because he hasn't been doing well or what.  But I just keep thinking about how he's ALWAYS going to have these issues and he's ALWAYS going to be in pain.  And the worst part about this whole thing- is that he is SO cognitively there.  He will KNOW that he is different and KNOW that his life "stinks."  So do you risk the life he has for a chance at a better one?  There's no easy answer.  

So anyway, that's where we stand at this point.  I'm hoping this new medicine will be the fix, and if it isn't... I think we are at a stand still.  He's had almost every part of his body checked, blood work, x-rays, stool samples... I don't know.  But I do know that I am SO GRATEFUL to have Dr. Defusco as his pediatrician.  I don't know what I would do without her.  The way she cares about Tripp and how she goes out of her way for him makes me feel like we are in really good hands.  


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