Break Kit

The last few days have been really hectic. 

Yesterday we had to take Avery to the hospital, via Ambulance, to get her tube checked out.  The hospital in Fargo didn’t tell us that the green stitches were dissolvable and would eventually break, so when her tube started moving around I, of course, freaked out.  She was screaming in pain, and it was terrifying.  I had to hold her in the back of the ambulance on our way to the hospital. Avery was in so much pain that she just passed out.  I know that sounds exaggerated. It isn’t.  Avery was completely unresponsive to anything.  She wasn’t reacting to thumping her feet, dropping her limbs, adding a pulse ox, being undressed – she was literally just laying in my arms, limp.  It was awful.

Once we got to the hospital and she got some Tylenol she settled down enough for the staff to look at her g-tube.  It’s actually fine, although a bit inflamed and the stitching is definitely pulling on her poor belly.  We got it re-taped and got better supplies and were on our way (thankfully!). 

Avery’s weight is now up to 11lb 3oz, with her diaper on and tube in, of course.  After her ER visit, we went to CVS to get her Prilosec medication.  TriCare apparently doesn’t cover it.  Medicare apparently doesn’t cover it.  $45 a month for her to have medication she needs in order to keep her acid reflux under control.  What a shame!  Of course, it was filled, and we paid out of pocket – happily.

We also got Avery’s beginning of a ‘break kit’.  A break kit is a kit that most OI families carry with them in case of a broken bone or fracture. It contains materials to splint a limb, immobilize it, medications, medical information sheets and other useful materials for an unexpected event.  It was well over $50, and we didn’t even get all the materials! 

We’ve started the paperwork to enroll Avery in EFMP (exceptional family member program) through the Air Force.  We are hoping that through this program we will be able to get the medical help that Avery so desperately needs.

On Dec 13^th we will have a “family team meeting” with CPS and all supportive party’s.  I’m allowed to invite anyone who I feel was a support during the course of the investigation thus far.  I wish I could invite everyone I know!

Avery has a Dr’s appointment on the 30^th, Geneticist on the 4^th.  We’re going to be packed tightly with all of these appointments!  Plus there are tons of appointments in between.

We are enjoying having Avery home – it’s been a huge adjustment, but it has been incredible.  She’s a much happier baby with her g-tube.  She doesn’t cry as much, she smiles a lot more, and she’s a lot more content to sit and play instead of being held constantly.  I’m so glad that she is able to get the nutrition she needs without having to stress her out trying to get her to eat a bottle.  Since she has the g-tube we’ve discovered that her aversion seems to be primary liquid.  We’ve started offering her bits of baby food and she absolutely LOVES it.  Not so much on the pears, but everything else we’ve given her she has scarfed down.  She only gets about a tbsp. at a time, but it’s an improvement. 

 

I want to thank everyone who has been supportive of us through this journey.  I wanted to write a lot more but Avery is crying so I have to go!