thoughts of the day

The funny thing about hospitals and doctors is that they "claim" to want you to get better but there is no way to get better in a hospital where they wake up you all night long and poke and prod you all day. CHOP took great care of Weston and minus the shared room that, still to this day, makes me want to take a bath in hand sanitizer, we were happy with everyone. Also, minus the cocky nurse who told me I was "just" a mom and that they didn't like parents to spend the night in shared rooms-again, clearly this man was out of his mind. Adam and I don't leave the kids and I am certainly not going to leave our 4 year old alone in one of the most dangerous cities in America. No sir-I saw those securtiy guards. I am way scarier than any of those folks. Plus, there is no way that a little IV is going to keep Weston from hopping out of bed and leaving!

Since coming home, it feels like we are just trying to stay above water. Weston's new around the clock medicine routine has been an adjustment. He hates his oxygen so we sneak in, when he is sleeping, and put his space helmet oxygen blower thingy back on. Around 4am, he has an episode or 2. These stopped in the hospital but have come back now that we are home-VERY BAD NEWS. Then, throughout the day, Accredo calls me, not once, not twice, but 3 times. Yesterday, I spent over an hour on the phone with them and then had a nurse come visit for an hour. They have yet to tell us anything we don't already know so I am wondering what all I am really getting for the 55,000 dollars the insurance paid for him to be on the meds for the month. We are trying to keep life normal but they seem to be standing in the way. Last night, Adam got so frustrated, he said he didn't even want to do a garden. That is a huge thing for Adam and I was sad that really, it has gotten to the point where we feel like we can't live our lives because of all of these people. It's not even giving the meds that gets in the way-it's that I am constantly on the telephone. I hear you all saying "don't answer the phone". Well, my friends, they don't take the hint. They continue to call over and over and when you answer, they reprimand you for not answering earlier. It is like being on call 18 hours a day. I don't get to talk to people I like on the phone and I definitely don't want to talk to people I don't know on the phone either-especially people that aren't giving me helpful information.