Friday, February 11, 2011

A full on frustration

Alright...  I am trying to be as optimistic as possible about this G Tube.  I have been told by MANY cf parents that it was the best thing they could have done for their child, and I believe them.  But this is not at all what we expected.  The surgery went as well as it could have.  He took it pretty rough though and even though the GI doc said most kids don't even need pain control post-op, we were giving him Tylenol every 6 hours for almost a week.  He is doing a GREAT job tolerating the feeds but here is where the frustration arises.
    Back when our CF team started talking about doing a G tube, we asked them if, in an effort to avoid the surgery, we should start waking him up once a night to do an extra feed.  The kid sleeps all night so this would have broken up his sleep, but would have given him an extra meal.  They said, verbatim, "no,  the calories that you would be giving him in one meal would not be able to equal up to what the G tube can give him".  So, when it came time for the surgery, we agreed that it would be for the best. 
   Ok, fastforward to the hospital.  Post-op.  The nutritionist comes in to discuss what we will be doing with the feeds.  She says we're going to start him on 27 cal/oz formula (which is normal for him) and we're going to do 6 oz over a 6 hour period.  WHAT THE F***?????  That's LESS that one of his normal bottles!!  By about 4 ounces!  We... Were... Pissed...   My husband said he would have woken Logan up EVERY night and fed him a 10 oz bottle and avoided a surgery.  We both felt pretty cheated.  Plus, on top of that, as most of you that use Gtubes know, the enzymes lose their effacacy after about an hour.  So we give him a dose at the beginning of the feed and a dose at the end.  But if they are only effective for about an hour, that's 4 HOURS of food that he's not getting nutrition out of!   In short, he would have gotten MORE calories out of us waking up once a night and feeding him a bottle than he is going to be getting out of these feeds. 
  When we (civily) brought this up to the team, they said 1) this is just a starting point (which I get, but come on... I was imagining we were going to do like 30 oz a night) and 2) Waking him up in the middle of the night is not good developmentally at this age (which I also get, but don't some 9 month olds STILL wake up on their own once a night to eat?
   We are trying to contain our frustration and have faith in our team, but this is really pushing it.  This is the first time I have disagreed with their plan of care.  Are we being unreasonable? 
   The only upside I am seeing at this point is that it looks like he's qualifying for 8 hours a day, 7 days a week of Respit care and we only have to pay $25 a month for it.  So we will be having a nurse come in overnight to handle the feeds and we can get some much needed rest.  Right now one of us has to wake up twice a night to change things or turn them off. 
Please tell me that i'm being unreasonable... I need some support here...