First, some updates from yesterday:
Emily did have a blood transfusion in the afternoon. It
really helped her look and feel a bit better - it also helped her heart
rate to go down some. They were concerned about blowing her IV by doing the transfusion, but they also didn't want to stick her again. Thankfully, they didn't run into any issues with the transfusion.
She had her catheter removed and did very
well with that. She has some swelling but ice seems to be helping with that. She was doing well with her feeds during the day. She
never did have a bowel movement yesterday. She
rested quite a bit during the day, but was still pretty jumpy, so I am
not sure that she was feeling very rested.
Overnight, Emily decided to
make things a little exciting. Around 3am, her oxygen levels dropped,
her heart rate got pretty high and she spiked a fever. She was
receiving her feeds through a pump, but decided that she was done with
that, so she pushed all the formula out into a Farrell bag (it is supposed to allow her to push air out of her belly). She sounded pretty "gunky" and at one point was
really struggling to breathe. She was put on oxygen and that seemed to
She had a chest x-ray and more blood work (did I mention the
poor girl looks like a pin cushion at this point?). The chest x-ray
showed that her left lung was not fully expanding so we had the
respiratory team come and work with her a bit. I am also doing some
breathing exercises with her throughout the day. Her fever finally
broke close to 5 or 6 am. Her heart rate went down too, but is still on
the higher side of normal. She has been on minimal oxygen all day and
still sounds a bit “gunky”. She has been put back on IV fluids rather
than her normal feeds, but we hope to continue the feeds overnight.
here are our prayer needs at this point:
~ She needs to have a bowel movement.
~ Her breathing needs to stabilize so she no longer needs oxygen. Pray for no pneumonia!
~ We need to get back to regular feeds and she needs to tolerate them well.
~ Pain management has gone fairly well, pray that continues.
Thank you so much for the continued prayers! You have no idea how much
it means to us! This has been a challenging time, but we know that God
is in control of this situation and He knows Emily’s needs better than