The Home Stretch

Avery has been doing really well.  He has moved to his home unit (ICP) which is just a few doors down the hall but they know him very well and it is comforting to have him in his "homebase".  Some of the nurses in ICU were upset that Avery was leaving b/c typically if a child is on a drip of narcotics then they need to stay in ICU.  Seeing as the ICP knows him, they were more than comfortable to take him back.  Avery sure has won the hearts of many here.  It is nice to see that so many people care for him. 

He is off the versed and did really well with that. So now it is onto the fentanol.  They have increased his methadone (which is already a huge dose) in order to bring down the fentanol as they are in the same drug class.  I was not here this morning and one of the attendings decided that he should bring the fentanol down by 50% (on friday) and have him home by Monday.  I think this is far to aggressive for a kid like Avery who has already shown he is hypersensitive to any changes.  Why he thinks this will work for him is beyond me especially after all Avery has been through.  I think others agree. Plus, I do not feel comfortable with this plan with Rick and I leaving town over the weekend.  So I will definetly speak to the team during rounds in the am. 

The other issue is the IVIG which is still driving me crazy.  He brought up his platelet levels on his own which is great but the infusions are weekly and I just don't feel comfortable doing this at home and not knowing what is going on in his body.  I want him pretreated with steriods but the Immunologists say no.  Well then I think it is going to be a no to the infusions for me.  I just cannot have Avery go through this ever again.  Of course with the winter season coming and this hospital is already so crazy with sick kids, it makes me nervous to not do them too.  I am just stuck between a rock and a hard place on this whole thing.  I want to make sure I do what is best for Avery. Wish I knew what to do.

If all goes well with the fentanol wean then we expect Avery to be home sometime next week.  Woooohooo.  Just before the 6 week mark.  Cannot believe he has spent the summer inpatient. 

Rick and I are pretty excited about going on our rafting trip.  I am a little nervous being far away but Avery is in good hands for sure.  Here he is with his FAVORITE nurse :)