We are OUT

After what seemed to be an eternity of tests and paper work on Monday, the kids got out at 4pm that afternoon. Lillian is trying so hard to be happy. She came home with an itchy rash from the tape that covers her chest, including her scars. Then to top it off had an allergic reaction, in the form of another rash that covered her chest and neck. She is taking benedryl and has cream to put on her rashes, but it doesn’t seem to take the rash away quickly enough. Her cousin, Sam, is the greatest cure for Lillian. He entertains her and helps keep her mind off her itches.

Matt is zoned. He can’t seem to sleep. The night before discharge he slept only 2 hours, from 2am-4am. I took him on wagon rides through the IMU all night. Today, he took maybe a one hour nape and is crying right now trying to go to sleep. The poor guy. I have watched a movie with him and have tried rocking him. He probably is stressed out from the hospital stay and no-one could blame him if he is. The good news is he came home on no O2. Matt's surgeon says he will still have some breathing issues and considers the surgery a success if he is only hospitalized twice this fall. Maybe if we are super blessed the hospital won't happen at all.

If you can’t tell we are feeling a little sorry for ourselves. Both Matt and Lillian can't go swimming, to the park or even take a deep bath for 6 to 8 weeks. (There chest can't have any water sitting on it.) I am administrating over 30 meds a day between the two kids. I draw them all up in the morning and have a sheet that I made out with an hour by hour detail of what needs to go to which kid. Maybe, the meds will get reduced when we go to our post-op appt.

Even Marissa is feeling poor and picked on because she doesn’t get any of the meds:> Silly kid. Monday night, our first night back and Marissa had night tares, twice. Meaning she is screaming in her sleep and doesn't wake up. Philip, the great husband that he is, got up both times with her and ended up curled nxt to her this morning.

Both kids have a follow-up appt. on Thursday at noon. That means more tests and x-rays. Yea…and yes that is a sarcastic yea.
I managed to get a three hour long nape today. My sister, Leah (flew in today to help out), and my mom watched the kids and handed out the meds. Tomorrow will be easier. I don’t know how, but the lie is how I keep on going and maybe one day it will be better.
Matt stopped crying and is hopefully sleeping restfully. We will be back Saturday to Utah. My mom is helping me fly with the kids.