Home already

Seriously, I don't even know where to start......I cannot believe we are home already but we are so happy.  I have read online and heard from a lot of people that the Glenn is the easiest of the surgeries.  Average recovery is around six days.  Based on our history I laughed at that.  Plus when I spoke to Dr. Ilbawi's nurse while signing consent she said recovery for a 'sick' baby was about fourteen days.  Lucy was considered 'sick' because she was admitted early due to the decreasing heart function.  We were hoping to be out of the hospital by the end of July.

  The three days following surgery were pretty much a repeat of the last.  First weening heart medication, then removing chest tubes and last pain and sedation.  This time however it went much quicker.  We were most worried about chylothorax.  We did not want to go on formula again.  Thursday morning her chest tube was showing a milky drainage and we were so disappointed.  But then during rounds the nurse practitioner said it didn't look like chyle but more like lipids.  Sure enough when they checked the line in her chest it was almost all the way out so the lipids were leaking into her chest and out through the tube.  When they pulled the line the drainage went back to red.  NO CHYLOTHORAX!!!!  Due to the IV line being pulled they ended up stopping some of her medications.  The problem with no line is they have prick her for any draw blood.  We didn't want that so the surgeons came in to replace it.  Unfortunately because of Lucy's size it is very hard to get a arterial line in place.  The surgeon tried a bunch of times with no luck.  They finally decided to have the doctor from the cath lab come up and place the line using ultrasound.  He was successful but the line was pretty much in her face (I'll post a picture later).

 Friday morning they stopped her pain medication.  Three days after open heart surgery she is on Tylenol as needed.  These heart warriors are amazing!  Saturday morning they pulled her chest tubes and after stopped her sedation medication.  Officially we were off all IV medications.  We were able to hold her again.  We don't like holding her with chest tubes so we always wait until they are removed.

  Sunday Mike and I split time so someone would be at the hospital all day with her.  We just hung out and she was able to have a couple visitors.  Then we heard that they were planning to move her to the floor later that night, five days after surgery.  A bed on floor two wasn't available until Monday morning, so we walked down there around nine in the morning.  During rounds later that day the doctors were talking about sending us home the next day.  Yippee, but I wasn't going to believe it until the discharge papers were submitted.  Sure enough Tuesday rolled around and they were finalizing medications for home.  One week after heart surgery we were headed home.  A couple things are different between this trip home and last time.  Her medications are more frequent (two are given three  times a day and two others twice a day).  We are also giving her Tylenol for pain on a regular basis.  Her incision is not yet healed so we have to be careful picking her up and bathing her.
 
Tuesday afternoon and night was a little rough.  After being poked she doesn't trust that a diaper change is just that so she goes a little crazy for those.  She is still getting used to being at home so she is crying a little more.  The loudness of her cry has increased, which is awesome when holding her up on your shoulder.  Each day has gotten a little better and we are hoping by next week she will be back to her old smiling self.

We have yet to resume bottle trials but that will come in time.  Her newest thing is reaching for things and bringing them to her mouth.  We have heard that the Glenn is a game changer and we are hoping this is true for Lucy as well.  Only time will tell.

Next week we have a follow up with the surgical team, then we are back to our cardiologist following.  She was sent home on oxygen so we will be looking to remove that and get one more thing off her face and make her a little easier to take places!