The "OI" Card...

I’m writing tonight’s entry from the hospital – again.  Avery’s g-tube got severely infected on Sunday (after the scary ambulance ride!) and by Wednesday it was so awful that being admitted was the only ‘safe’ plan for her.  She has been on ranopine and vancomycin to help with the infection in her stoma, as well as heal the double ear infections she has gotten. 

The antibiotics seem to be doing their job.  She isn’t as fussy, she’s exponentially happier and she seems to be in a lot less pain.  She still gets medication after each tube cleaning (2-3 times a day) but that’s only because it is very uncomfortable for her to have to have the tube pushed on, pushed around, and the wound cleaned with q-tips.

The bottom black stitch that was holding the tube into Avery’s stomach was ripping through her skin.  If we would have left it in another day it would have actually ripped right out of her poor stomach.  I’m so glad I trusted my ‘mommy instincts’ and got her an appointment!

Avery is now up to 11lb 8oz.  She has gained about a pound in the last week, which is incredible!

 

On Tuesday, Avery will get another x-ray done on her wrist to confirm the break that occured during our last hospital stay.  If I’ve counted correctly that will make the 57^th x-ray for Avery since her birth (the majority of which are in the last month).  I’m so worried about the constant x-rays, especially with OI.  Who knows how many x-rays a person with OI gets in their lifetime!  I bet it’s a lot.

I want to just take a moment, again, to clarify that my feelings towards the Pediatrician on base are not ones of ill-will or malaise.  I absolutely think that she is an amazing person, very sweet, caring and compassionate – and above all else – she is willing to help others even when she is not “on the clock.”  She deserves a lot of credit for the GOOD things she has done.  Please, do not use our story against her.  It is not fair to her.  We struggled with what was the best thing to do for Avery.  The Dr is human and is not incompetent or any of the other things that we’ve been ‘apparently’ saying about her.  I want this to be public knowledge. 

Today we got some pretty crappy news.  We were denied the request to switch PCM’s from the Dr on base to the Dr downtown.  We were hoping that we would be able to continue seeing Dr P because of how involved in Avery’s care she has been.  We’ve built a great bond with her and she understands our situation because she has been with us every step of the way for the last month.  The command out on our base denied our request to switch.

I called down to one of the best OI facilities in hopes that we could get Avery seen, a confirmed diagnosis by those who are incredibly familiar with the disease and have seen a variety of severity, but unfortunately because of the on-going investigation they are not going to be able to see her.  (This is NOT something that is their fault!)  Apparently there are a lot of sick families who really DO abuse their children and then play the “OI card” when it just isn’t true.  Because of this, the hospital can’t get involved in open investigations because if they did their hospital would be flooded with parents trying to prove they didn’t hurt their kids.  This would delay and hinder the ability of others to get the high-quality care they need and deserve.  So, when this is all done – we will be Omaha bound!

Other than that, we are pretty much just sitting in the hospital (again) waiting for the cultures to come back so we can head out.  The preliminary results so staphylococcus ae and gram-negative rods, but these are not confirmed results.  I had the nurse check the status of Avery's blood OI test, but it just says "pending".

 

As always, thank you so much for your thoughts and prayers.  I’m emotionally drained today so I just can’t seem to write as fervently as I usually do.  I’m going to go snuggle my sweet girl in an effort to lift my spirits!