HAPPY NURSES DAY!!!!!

I would like to first thank ALL the wonderful nurses I currently have and had and encountered through my kids.  You guys are like family to me.  Thank you all for what you do, we are so grateful. 
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We had a great day on Sunday.  Got to enjoy a little of Avery's birthday and then one of my nurse offered to work so I could catch opening day of softball.  Thank you Lisa!!!!!

The last couple of days Avery has been struggling a bit.  He spent alot of time vomitting and off color yesterday, not sure if it was due to secretions or stomach stuff.  Hoping his home IVIG yesterday will make a difference.  Tonight he seems to have junk in his left lobe and is now on bipap.  I am hoping to be able to nip this in the bud with lots of chest pt and suctioning and support (O2 & bipap). 

Today we saw the motility dr.  I have to say that I was not optimistic at all about this appt. but I was pleasantly surprised!!!!! He was well prepared and so informative and most of all encouraging that we have options. 

Basically we have surmized that Avery's intolerance of feeds are more of a "sensation of pain" rather than actually intolerance due to distension (swelling of the belly) this is a good thing.  He has actually had success with antidepressants such as celexa and zoloft in these case.  I know, not only is my 4 yr. old addicted to methadone and valium but now he is on zoloftt.  But hey, whatever works without being invasive is my motto at this point.  We are also going to try a drug that he had a previous reaction to that is on his "allergy" list b/c  we are not really sure it was a true allergy b/c how he reacted is not a side effect of this med.  So I am willing to try it under nursing supervision.  I am actually ok with it.  We have another med. to try if that doesn't work.  BUT....

If these fail then the last option is ileostomy, this is what he is suggesting.  This is not something I am willing to do at all.  As I have said I will not do anything invasive with my boys especially if it is NOT proven to work for them.  It is basically like having a colostomy but higher up.  I mean it is not even the procedure but my visions of Isaiah pulling a poop bag off Avery and having fun with it. UH NO THANKS!!!! I am ALL set. I just don't think the benefits outweight the risks in our situation. 

So I just really hope and pray that these meds work to get Avery to at least 15-20cc/hr. of j feeds so we can protect his liver as much as possible and his line as well.  One step at a time right?