I'm her Mom.

I haven’t written much in the past two days because we have had a lot of big changes and a lot of crazy things happening. 

Avery lost weight two days, gained weight one day – it pretty much averaged out the same.  She is 13lb 10.7oz – still.

Avery is now transferred out of the original hospital and in a different hospital in Fargo. 

This morning, before leaving Grand Forks, Avery was fed at 4am.  Her feeds last 90min.  Apparently, that was bad.  But I’ll get back to that in a minute. 

Once we arrived in Fargo a few things had to happen for her to have surgery.  She had to have blood drawn to check her cbc and clotting factors.  She had to be fasting for 6 hours prior to surgery.  She had to have medical records transferred. 

Hmm.  Grand Forks fed her at 4am.  90 minutes.  6 hours.  That would be 11:30am.  Too bad her surgery was scheduled at 10:30am!  So, because she was fed too late, they had to push her surgery back.  Try explaining that to a six month old kid who is failure to thrive and starving.  Not happening. 

Grand Forks forgot to send her medical records with us.  They didn’t send any of the paperwork they were supposed to send (x-rays, labs, etc..).  So we had to wait on them.  Then they faxed over ALL of her medical records, over 120 pages. Yikes.

Then, she needed to have blood work.  Except, no one could find a vein.  They poked and poked and got enough for the CBC, but couldn’t get enough to test her clotting factors.  They even had to use a cool machine called a “vein finder” and couldn’t find any.  My poor girl has no veins!  At this point it was already two hours past when she should’ve been back for surgery.  They finally got a machine that could test her clotting factor at the bedside, with just a drop of blood.  (Boy, I wish we had that to begin with!) And we were set to go!

 

(Picture taken from Colorado Children's Hospital)

So, she had surgery to have a “g-tube” placed.  She was put under general anesthesia and then intubated her, put a tube down her throat and into her stomach, surgically cut a hole into her stomach and a small balloon was placed inside her stomach to prevent the tube from coming back out.  The whole procedure took about an hour (from the time I let go of her to the time I got her back).  It was absolutely terrifying, although I know it is done routinely so I didn’t need to be scared.  The tube is in place in order to feed her all of her nutrients and medications until she learns how to take things by mouth again.  She still has absolutely no suck/swallow reflex and gags on anything unwanted or unexpected that is put into her mouth (which as of right now, is everything).   

She came out of anesthesia fine.  She was scared and hurting afterwards, so I tried to comfort her, but it was pretty hard.  Eventually she settled down…but that was temporary.

Right after the blood draw was done I went to put Avery back into her sleeper.  She pulled when I was pushing and I heard POP come from her clavicle.  She was already screaming from the blood draw, so I didn’t know what to do.  When I went to release her elbow I heard another POP from her elbow(ish) region.  Since she was screaming I just picked her up and tried to settle her down.  I felt absolutely horrible.  I let the Nurse know (and my babysitter – I mean, sister – was there too) and she said that they’d examine her after surgery.  Once all the medication wore out of her system she seemed to still be in pain.  We couldn’t figure out how to calm her down so I laid her on the bed to look at her arm.  Every time I move her right arm, bend it, lift it – anything – she screams. 

The Doctor wants to do an x-ray before treating her or giving her any pain medication.  Avery has had probably 30 x-rays, 25(ish) of those in the last three weeks.  I don’t know how parents of OI kids protect their children from radiation – especially if every time you hear a pop or think there is a break or fracture you get an x-ray. 

My heart hurts knowing that Avery is in pain because I accidentally hurt her.  I know that this is OI territory, it comes along with the disease, but it doesn’t make me feel less of a monster.  I’m her mom.  I’m supposed to protect her from pain.  I’m supposed to know what to do when she’s hurting.  I’m supposed to know how to take care of her better than anyone else.  And I’m so sad and terrified that Osteogenesis Imperfecta is bigger than me.  There just aren’t a lot of medical resources here and no one seems familiar with it.  I need someone to help me.  Teach me how to handle her, dress her, splint her, etc… I feel so lost in the OI world and I know I can’t be alone in that.  This is such a scary time for us both.

Please keep Avery in your prayers that she can cope with the pain and that we can all learn to be better caregivers for her.  And as always, thank you for your love and support.  The outpouring of emotions from those around us is incredible.