Post Surgery Day 2 and 3

Day 2

  There hasn't been much change in Ellie's progress today, and probably won't be for the next few days.  They are taking it really slow, which is good.  There is a fine line with everything and there is no telling when everything will clear up and she will not have to be sedated anymore. 

They took her off the paralytic and in a while we should start to see her moving again but they will still keep her pretty heavily sedated until she is off the ventilator.  When Ellie wakes up and starts moving, her oxygen saturation levels drop so that is why they are trying to keep her as calm and sedated as possible. They have started a new medication, sildenafil, that will help to open her pulmonary blood vessels up and help to alleviate her hypertension.  It seems like she is on even more medications now than a couple of days ago.  She is on a few sedatives, her pain meds, and diuretics.

Today (Sunday) we were able to see Ellie awake for a few seconds at a time.  Even though we can't hold her it's nice to see her beautiful eyes open and look around.  She even licked a peppermint flavored spongy stick that the nurse gave her to clean her mouth.  Everything has been going very slow; 2 steps forward and 1 step back, but progress is still being made since her surgery 3 days ago even though it doesn't seem like it.  I guess we didn't learn enough patience in waiting for her to have her surgery that now we have to wait longer than we thought for her to recover. 

She had an echo done this morning and we are still waiting to hear what the results are.  The nurses have been great at keeping us educated and informed about Ellie's condition.  We are lucky that she has one-on-one care with the nurses.  Even though Ellie is sedated and seems like she sleeps most of the day, it seems like the nurses never stop.  They are forever changing syringes and tubes and administering medications. So much work for one complicated little girl but she is so worth it!

Tonight Mike and I headed back up to the hospital.  Yesterday we got there right after Ellie's episode of wakefulness so we weren't able to see her do much.  Tonight we were lucky to be able to catch her awake for a few minutes.  It doesn't seem like it's such a big deal, but it is when we haven't seen her awake and there has been very minimal movement for a couple of days.  She is definitely Ellie in that sedated body of hers, reaching to touch, arching, and trying to kick her legs - all things that she regularly does at home.  The nurse had to give her more sedation medication because she was getting a little too active.  Her echo results were a lot better than the one they took a couple of days ago.  The nurses say that she had a very good day today.  She is going in the right direction, it is just going to take a long time.

Day 3 - They put a blanket on her head to try to keep her body temperature up.