Day 4 post surgery.

Were still in the hospital and I have no clue what to expect from today. Annabelle should have been able to leave yesterday but she wasn't making progress as the doctors expected she would. I think her energy levels are being directly affected by this new nutrition issue were simultaneously having, which is preventing Belle from trying to move around and recover from the surgery. There are several goals that we need to make today if we are able to go home.

1) Sit up. Get up. Move around

Annabelle has literally laid in the bed for almost 4 straight days now and cries her little heart out if you try to convince her to get up and move. I made her move around a little yesterday and pulled her out of the bed to sit in my lap (that looked a lot like the same laying position.. But at least she was away from the bed). She did well moving but she spent the following several hours in significant pain and nausea. Annabelle HAS to try to sit and move soon.. I cannot take this kid home and strap her into a carseat if she can't even sit yet. 

2) Accept bolus feeds at our goal rate.

We're used to setting her bolus feed of 6oz to nearly 200ml x hour. We are currently only able to achieve 4oz and pacing it at 100ml x hour. 

3) Transition from racked venting to Farrell bags to vent her tummy. 

I really do not want to go gome and making a fort around my house with open tubes to vent Annabelle's tummy.. Utilizing a bag to contain the mess and horrid smell is much much preferred lol

4) Manage pain a lot better!!!!

We've even off morphine since early yesterday morning, but she is dependent on taking Motrin constantly and is in screaming pain and paralyzed without it.. I think the pain and fear of pain is what is preventing her from trying to get up and move around.

5) Bowels need to pickup.
She is still hardly moving anything in her GI system. Hopefully the length of time being off morphine will allow her system to pickup a bit and we can see some progress today. I think this too is a key player in how uncomfortable she is.. But really, what do I know?!

6) Get off IV fluids and meds

Annabelle hasn't eaten or drank anything more than sips of apple juice since Tuesday. Each time she drinks juice, we have issues with her feeds, venting, nausea etc. She doesn't have an appetite at all.. Which is anything but Annabelle but at the same time, I don't think I would either in her shoes!

Then of course there is the mile long list of things I need to accomplish as well: home health, medical supply changes and schedule shipment, find supplier for the new formula, follow up appt with Metabolic Lab ASAP, find a nurse and home health service ASAP, insurance, new prescriptions, dietician consult in home when we get there. 

Mady had a sleepover with my Grammy last night and is already asking to have another.. Personally, if I had my choice in it all, we would go home today before this ice storm hits with our entire family together. Fingers crossed we can get home today. Annabelle has a LOT to accomplish between now and then.. But I really don't want to be on the roads when the weather gets terrible.





UPDATE: We're walking! YAY! Discharge will be this afternoon :)