All in

Sorry I didn't update last night, but the need for sleep won over the hope to write. 

Emily was admitted to PCU Thursday night with a bowel obstruction. 

My helper came up to stay with Abby so her Grandparents could get some rest.  I stayed with Emily. 

She didn't sleep at all the whole night.  She was in  a lot of pain and still confused from having such long seizures and being so sick.  They hooked her g-tube up to suction where it drained a lot through the night.  To me, it looks like we are deflating her like a balloon.  I have never seen her so thin.  It's like her weight just melted off.  Her heart raced and she twisted and turned constantly, unable to get comfortable.  It was scary not being sure what was going on or whether she needed to be in surgery. 

We expected Abby to go in for her line placement yesterday morning, so I waited by the phone to leave Emily  for Abby's procedure, but the call never came.  In the end, the surgeon had decided he wanted the line culture from the subclavian (they put in last Saturday) to be clear for 72 hours before he put the new one in.  I'm not actually buying that, as word on the street is, he forgot.  Either way, it's going in this morning.  We are in the surgical waiting area right now.  She's getting another Broviac on the same side as the old one was, they will just tunnel it in the other direction. 

Emily has SMA Syndrome.  Basically, the mesenteric artery and aorta have compressed the duodenum between them causing an obstruction.  She has been in a lot of pain from this condition.  The cure is to actually gain weight and have her own fat lift the mesenteric artery off of the bowel.  This is a relatively rare condition, mostly being associated with people in body casts who lose weight quickly.  Up until Emily presented with symptom's, she was a good weight for her.  She's always been tiny, so she doesn't have a lot of body fat anyway.  It's possible she got a little virus over the weekend like we thought, and the ensuing weight loss caused the condition.  We're not sure how long she'll be here. 

Today she will go to endoscopy where we're hoping they are able to run a temporary tube past the blockage and into her small bowel where they will drip slow feedings in.  She will also have a PICC line placed and begin TPN with lipids today.  She has been on Morphine which helped significantly with the pain.  She slept well last night, before she pulled her IV out at 5:30 am.  :(

This is a busy day for the Cushman girls! 

Last night, Emily moved to the floor and Abby moved to the room on the other side of Em's.  There's an adjoining door which makes it very convenient.  I was thankful to have my friend who came and helped us get the girls moved and then made sure I got something to eat.  By that time, I was on auto pilot from lack of sleep and barely able to think.  Miraculously, we make through the day and had a decent night.  Both girls slept pretty well, as did I.  I did wake up this morning yucky, gross pink eye.  I'm trying not to touch my kids. 

This will certainly be a long day, but thankfully everyone is doing well.  No more am I bummed or upset about being here.  It's like going to the beach and not wanting to get in the cold water, so I tip toe in complaining all the time.  Then a wave comes and knocks you all the way in.  After the initial shock, it's not so bad being in the water.  That's how I feel now.  I'm in, we're all here, and we just have to swim. 

I can't think about our move or TPN, or anything other than being here and taking care of them.  There will plenty of time to deal with all of that, but for now--I feel peaceful.  No doubt a gift from God.  I am thanking Him for what I can not understand, but am choosing to see as blessing.  There has to be a reason for all  of this, so I trust in Him.