Drama!

My oh my...the ways we find to fill time :)

We've had several really bad belly days for Abby...and I mean bad--she turns grey, sweats and just generally looks horrible with her feedings.  We are running them at 40 in 3 hour cycles.  It's hard not to be discouraged with how hard it is for her.  We did a CT scan of her head yesterday just to be sure there's nothing we're missing.  None of us thought there would be, but I wanted to be sure.  I haven't heard from the neurosurgeon, but he hasn't' come in to say she needs a shunt either.  I'm assuming that means she's ok. 

They stopped one of the antibiotics she's on to see if that was making her sick.  Her baclofen pump got turned back up too!  Yay for that :))  She needs to be looser.  All of that tone coming back has been really hard for me.  She needs to be repositioned often, so my back was starting to hurt.  Her being looser helps with that. 

Hannah texted me yesterday to say something might be wrong with Emily's new G-J tube. I almost choked when I opened the picture of it she sent.  Um, ya think?  The balloon was deflated and it was almost out.  AHHHHH!!

I tracked down the doctor, who arranged for interventional radiology to get her in ASAP.  I had to run out on Abby again to get Emily.  This time, Abby flipped out.  She was not having Mommy leave her for the third time this week.  The doctor gave my poor Abby a nice, happy dose of Ativan to help her not care quite so much about it.  I don't feel good about that, but I think it's better than her being so stressed. 

I ran home, grabbed Em, Hannah and Sarah and made the trip back to the hospital.  What I thought was an awful situation was not quite that bad.  When we got her in, the x-ray showed that the tube was still almost in place.  I think my caregiver accidentally deflated the balloon that holds it in when she gave morning meds.  She must have hooked it up to the wrong side and the water came out.  The balloon being intact meant that we could save it.  It also meant that Emily didn't have the abdominal trauma they were concerned she could have. They moved it back in place, confirmed it was good and we were on our way. 

That was not a fun situation, and my stress level stayed pretty high.  We all went up to see Abby, who was having her typical bad belly day, she just looked even worse because she was tired from the ativan.  The nurse needed to do the dressing change on her central line, so I waited to take the girls back home until that was over.  By then, it was almost 6pm.  I decided to take the girls home and spend some time there.  I've never left Abby awake in the evening before.  The nurse got her to sleep that night.  She washed her hair and massaged her arms and legs before she went to bed.  God bless that sweet lady for taking such good care of Abby and giving me some time off.  Abby didn't love me gone, but she handled it.

I stayed home and cuddled Emily, and then ended up sleeping in my own bed!!  Jeff came home, so he took the early shift with Abby and I got to hang out at home with my girls on a Saturday morning.  That was an awesome, unexpected surprise. 

Now, I sit here with my nauseated girl and no idea of what this week will bring, but so very thankful for an unexpected breath of fresh air that came from a dramatic, scary situation.

~Please continue to pray about the right house in NC.  Jeff is seeing several this week.  We are trying to decide if it's better to live closer to Jeff's work or the children's hospital there.  They are about 30 minutes apart. 

~My awesome church has a team in Honduras this week.  They need lot's of prayers for safety and guidance as they are the hands and feet of Jesus to all they meet this week.  :)

~Pray for Emily to have a good, safe, non-dramatic week.  She needs to recover and she really needs to put on some weight.  She's been running feeds for almost 2 weeks and hasn't gained an ounce :(

Thanks to all of you who walk this road with us, faithfully praying for my girls.  It means more to me than you can ever know <3