Those would be the emotions of the day. While frustrated and exhausted is nothing new around here it was wonderful to have such a happy day!
HAPPY- Riley had the best day she has had in 5mo. today! It was so wonderful to see my happy little girl who couldn't stop smiling and laughing again. I really thought she was gone forever and had just turned into a wild toddler. With all the infections under control and her gut having sufficient time to rest all the while being on 1oo% TPN again has made an amazing difference. She was all smiles and playing and laughing with everyone who would stop and talk to her. I missed seeing her happy and feel so bad we let her poor little body get so stressed out for so long and didn't do anything before now. Everyone started convincing me all the little things going on were just her "new norms" and so I finally just started excepting it. This is why she is known as Smiley Riley and why she is so amazing!
Frustrated- As usual someone always has to mess up the plans around here. This is why I tried to push for her to come home today but for some reason no one seemed in to big of a hurry to do anything. For some reason everyone seems to think they can just scribble out a few scripts and send us on our way... They don't seem to realize orders have to be sent out 48hrs in advance to have things ready in time.I warned the resident when she was in at 6am to wake us up... Ya, didn't see her again for the rest of the day... All I heard all day was "it's under control" and "we took care of everything"... Well I called her TPN company at 4pm and they said they had no orders, not good! So, I went out and started yelling at some people and pulled out some favors from some of our Riley fans at the hospital and needless to say we will at least be getting home even if it wont be until about 8pm if we are lucky. That sucks since I have to work the next morning.
Exhausting- I'm sure you can imagine why. This all started very abruptly last Friday at midnight. Were Riley and I then spent a very long night in the ER and I then got her upstairs in just enough time to work my 12hr shift with no sleep. Right as the end was in sight her Dr. came up to me and told me we needed to transfer her since she was getting sicker. That was a very fuzzy night but it led into a long week. I haven't left Arnold Palmer since the ambulance ride here last Saturday night. This is another reason I was quite angry to find out we'll be getting home in just enough time for me to get her settled, get a few hours sleep, and go back to work. The house is a disaster I'm sure, since it always is when we have to leave under these circumstances.
At the end of the day all I can think of is the victory though! Riley is great, Liam will be happy when we get home, Wil is doing great, so this is all that matters. Life is good! All the rest will work itself out one way or another. It always does... I have 50 million things I didn't get to today but it will all be there tomorrow and it will eventually get done. It's sooo the little that matter in life.... ever smile, every hug, every happy memory. Always cherish it!