Post Surgery Day 13

Daddy's little girl

So glad to see her eyes so much more wide and awake!

 I was able to spend a much needed "normal" day at home with the boys while mom and dad spent most of the day at the hospital visiting Ellie. 

Ellie had a pretty exciting day today as her breathing tube finally came out!  She looks so much better without that ventilator!  She is now on a high-flow nasal canula and seems to be doing well.  That will be one of the next things that they try to wean down - nothing like a little whirlwind in each of your nostrils!  Her feedings are almost back to full feeds and she is only on 3 IV medications.  It seems like the flolan (hypertension medication that has worked really well for her) will be the last thing to get weaned because nobody wants to touch it to see what happens.  They're all scared it might send her back into a hypertensive state.  She has been on the ventilator for almost 2 weeks so her lungs are kind of irritated and it left alot of junk in her lungs.  So far we have not seen her cough or heard her cry but coughing would be great for her as she will be able to clear her lungs better now that the nurses can't do it for her through the breathing tube.  The pacemaker is doing it's job, set at 115 beats a minute and was going the whole time we were there.  I hope it can at least last her a few years so she won't have to have another surgery for a while.  Replacing the battery actually requires replacing the whole generator but the surgery is not as invasive if the leads are still good.  The chest tubes are draining well and will probably still be in for a few more days until nothing more comes out.  No more fluid building up in her body (hopefully)!  The nurse told us that the surgeon got 300cc (mL) out of her abdomen which is quite a large amount for a small little girl.  Her stomach does look alot less distended today.  Sometimes I wonder why they only decided to place one chest tube from her initial surgery when usually they come out with three which would have been best in Ellie's case.  They were being quite conservative in all of her treatment, better too minimal than too much I guess.  We also tried to convince the nurse to let us hold her again today but Ellie was calm and they didn't want to disturb her or the arteriole line that is in her arm.  The doctor said she had a great day and is looking really good.

Ellie seemed really calm tonight, was awake for a little while, then would drift to sleep.  She is still on a pretty good amount of sedation meds.  When she was awake for a bit we were able to skype Grandad and Nonna and she would start kicking her legs like she was excited. 

The hospital and volunteers have been great to leave Ellie little treats now and then.  Every Wednesday all the patients throughout the hospital have an opportunity to play bingo and Ellie won today (actually, everyone wins something).  In the picture above you can see the pink thing that cradles Ellie in her bed.  They are the "loving arms" that she won along with a nice crocheted blanket.