After 7 weeks in the hospital, Riley FINALLY was able to come home!  She was slowly weened off IV diuretics, and is on a mix of medication that seems to be working with her respiratory system.  She will be following up with her Cardiologist and her Primary doctor next week to be sure.

After school on Friday, the boys and I raced to the hospital to get her, only to be met with 2 hours of Philly traffic!  We didn't get to Riley until 6pm, and she was asleep.  We took what we could to the car, and woke her when there was nothing else to bring home but her!  She said goodbye to all of her nurse friends, and after we took a group picture, she ran right to Mommy!  It was almost symbolic of handing her from the nurses care to ours.  It may sound weird, but after so much time, it was hard leaving the hospital for all of us.  The nurses have become friends and support, Kyle and Riley have developed a routine and a bond that is going to be difficult to change, and the boys and I are so used to running back and forth to Philly, going back to normal feels a bit surreal.

We decided to stay in Philadelphia at the Ronald McDonald house for the night, as the boys have REALLY wanted to play there with Riley for a while.  We let them stay up for a little to play with Riley around the house, and my heart was filled to see all 3 of my kids play together like nothing had happened.  

The night, however, got a bit rough.  First, Riley had 2 shots before she was discharged and spiked a fever, but we had no Tylenol.  It was too late to go out and get some, so she had to suffer through the night with a fever.  Second, we had her bi-pap, but not all her equipment.  We think since we didn't have all of the parts, it was blowing harder than she was used to, because she had a hard time sleeping and would get upset.  Third, she's on a whole new medicine regiment- which we left the new instructions AND her medication in the car.  Kyle had to go back to the hospital for it.  Lastly, we thought we packed her bi-pap mask.  We didn't.  Kyle had to go to the hospital AGAIN for it.  He did A LOT of walking last night.  The 3 of us were rather tired this morning.

Things got better throughout the day.  We got Riley some Tylenol, which made a big improvement overall.  We packed up at PRMH and said goodbye to our home for the last 7 weeks.  We ate before we left and then drove home in separate cars.

So how is Riley?  She slept all the way home, which was very understandable considering last night.  She has gone between happy and cranky, but now that she's home and seeing familiar toys, watching Rudolph & Christmas Eve on Sesame Street, and getting lots of cuddles on the couch, she's getting more content.  She's still not eating a lot, but that will return in time.  The funny thing is that, last night, she didn't want to take her "No No" off (the covering for her IV).  Since she has been home, she still doesn't want to take it off.  She does still have a rash, so the No-No is helping with keeping her from scratching, but it's also been a big fixture for her in the last weeks, so she's not ready to take that off.  She also didn't want to take off her hospital bracelet, but then was happy after it came off.  

Like I said, its going to be an adjustment to transition back home, but we are VERY GRATEFUL that we are all home together again!  Thank you to everyone for their support, because its been a long road.  Thank you for all the prayers, financial support, kind words, food, understanding, and everything in between.  Hospital living is a whole other world, and now its back to the real world for the 5 of us.  But the best part is that Riley is HOME, she's getting better/stronger, and still has her humor and sass!  We will be taking the remainder of this weekend to rest and just be together.