Victoria was with Maya when they inserted a new tube. She came out with tears in her eyes (Victoria) and said it was horrible. When we asked what to do if she continued to rip it out while at home, we were told to get a new one installed at the CCMC in Hartford. That means a 4-hr. minimum trip each time. Not a viable option. We then tried to look for VNA's that would visit New Hartford and work with kids - Victoria called around all day and got nothin'. This leaves us in a big bind for daycare as well, because Maya cannot attend while needing fluid delivery, not even with the tube inserted while in daycare, due to the danger of it being ripped out while playing. We were told to get her in normal routines as soon as possible, but that cannot happen by any stretch of the imagination. We go back up in a few weeks for a reevaluation on the vocal chords, and in 3 weeks for an evaluation of the lung blebs, provided she has no colds from now until then - tough to meet, as she has a dripping nose now!
So we are pretty down right now, and hope to be home tomorrow after a night in which Maya DOES NOT remove her NG tube. And then we start a new lifestyle with Maya at home and needing lots of care without her friends.
Sorry for the depressing entry,
-Chris
2 comments:
I wish I lived right down the street! I would put her NG in for you....remember it is vital for her to get the fluids, so as difficult as doing this is, she definitely needs it. The social worker at the hospital or Child Life specialist should be able to arrange all home nursing services before discharge from the hospital...I don't know what's been recommended but, if you did become comfortable with placing the tube yourself...you could always plan on removing it after each "bolus" of fluid. Kids eat better without it in and it might help remedy the daycare situation. Don't apologize for being "down" in the recent post, this changes your life quite a bit and NO parent likes to see their child in discomfort....heart hugs, thoughts and prayers to your little Maya!
I'm glad Maya is doing well. She's a tough little thing, isn't she? She's been through more as a toddler than most people have to go through in their whole lives. It sounds like she is tolerating all this extremely well. I know the difficult times are still ahead when you will be caring for her at home.
-tracie
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