Tuesday, July 27, 2010

Tedious Days---Part of Journey

Some days feel like I'm stuck in the movie, "Groundhog Day". I keep waking up in the hospital. One day I will wake up and this will all feel like a dream. Oh so I keep being told.

William was reunited with the other William today and they are roommates. They were so excited to see each other and William K. is so cute and full of energy. It was good to try to get some of that to rub off on William. William has perked up a bit today after getting the I.V. fluids and a few more nausea drugs. He has managed to eat a bit today and keep it all down. Funny how a little food can affect one's mood! The nurse just started his I.V. nutrition and it will run for 12 hours. Hopefully we'll be homeward bound after that.

The hospital is working on getting a home health nurse set up to come teach me how to administer the I.V. and possibly come in to the home for the first few days. I've been a little frustrated and annoyed with the pharmacy company and their constant mind changing over the whole issue of letting me take William home on an I.V. when both the doctors and I are completely comfortable with letting me do this on my own. I found out in the end that the current pharmacy that has our medical supply delivery account couldn't provide a pediatric home health nurse in Folsom and was reluctant to lose our account and was trying to make us stay in the hospital so they could provide the nutrition prescription. Are you kidding me? Maybe I misunderstood something, but the pharmacy rep who kept calling me to arrange teaching and such finally called and canceled our arrangements and apologized for not being able to keep our account, feeling she should turn us over to another company who could provide what we needed. She was nice, but she seemed upset as if our relationship went back to our childhood.

William spent much of the day building his new Lego Space Police Hyperspeed Pursuit set that he received from Little Wishes organization here at the hospital. He loves it and wanted me to post a picture of it but I don't have a camera with me this time.

Sometimes this blog is therapeutic for me to help process things. Sometimes it feels tedious and boring because I rehash the day with little introspection. Today it feels boring because I'm tired. But at the same time, I want a record of this for our family. I'll be curious one day what my younger boys will remember of this summer and the coming months. Will they be surprised one day to realize that the super fun summer they spent on non-stop vacation with their grandparents and cousins and aunts and uncles was because their older brother was battling a courageous war with cancer?


  1. jules, i love this blog. i love you! all of your boys will read this one day and be SO PROUD of their mother. and so proud of their big brother. and they WILL, like i do, glean such courage and faith from it. it will be a living testament to their FAITH-FULL mother and father. what a blessing.

  2. Oh Julie, you and Will are amazing! Sometimes hard times seemed to be magnified by seemingly simple tasks that are so difficult to accomplish. After one to many difficulties with out medical supply company, I informed them that I had kept a list of dates and phone calles regarding the issue and the only reason I didn't pursue sueing them was because I was too busy trying to keep my daughter alive and I would appreciate their help in doing the same! (eeck) I'm not sure that I passed that test of patience with flying colors, but I'm sure glad it's a thing of the past. Things are much better now and they will be for you and Will too!
    It was during that same time that I was having trouble with Medical issues and also a hospital in LA sent us to collections for an Emergency room bill that we never received. Mark actually found a card that said something like...I'm so sorry all the stupid people in the world woke up to ruin your day. I laughed so hard I cried. So, I'm sending a prayer that all the "stupid people" sleep in and the smart ones wake up to help you!
    With love,