We saw the neurosurgeon today. We have surgery to place a new shunt on Wednesday. No real news. Just that he thinks this is the best thing to do. We agree.
Henryk started vomiting this morning. We are hoping some Zofran will help as it seems to be motion related. That probably is due to nausea from extra pressure. His head has really grown the past week, almost back up to the size it was before his shunt. It actually is now a little bigger than our neurosurgery nurse practitioner’s head. Ironic. Would be pretty funny if it wasn’t so sad. Still is a little funny anyway.
We are preparing for Thanksgiving in the hospital. We will be ok with it. Memories will be made. We had been hoping to spend an extended time (2 weeks) in Wisconsin with our families during this time as Thanksgiving is always particularly nice between deer hunting and tree decorating and baking. But I’m hoping to order a dinner from our grocery store and maybe even muster up a pumpkin crunch cake which is so good it needs to be a tradition.
We also hope to get an exemption to bring Lily up to see Henryk while he is there. (This time of year no children under 5 are allowed in the hospital.) Last visit I saw a child life specialist who recommended putting some pictures of the hospital in a book to show her. I decided to write a little story to go with it. I named it “Henryk with the Hat.” Lily loves this story and I think it has actually been quite helpful for her. Here’s the story:
Henryk with the Hat
Dear Lily,I made this book for you on November 8, 2012, an incredibly difficult time in our lives. But Lily you have been and always will be my shining star.Love,Mama
This is Lily. She is a sweet girl with a little brother.
Lily’s brother’s name is Henryk. He likes to wear hats. Right now Henryk is sick. It is a different kind of sick that means sometimes he has to be in the hospital instead of at home.
The hospital is a place where lots of nice doctors and nurses can take care of Henryk and keep him happy.
When we go to the hospital we park in the ramp. We walk past the store and over the street in the skyway. We walk through the lobby and check in at the desk.
Then we take the elevator up to the 6th floor. We walk down the hall into Henryks room.
This is Henryks room. He has his own bassinet in his room. He has a picture of Lily and Mama and Daddy in his bassinet. He has a lion blanket just like Lily does!
Since Henryk is a different kind of sick, when he is in the hospital Mama has to be there a lot to hold him.
She sits in this chair and feeds Henryk his special milk. Mama always thinks about Lily while she is with Henryk.
Henryk gets medicine in the hospital. He gets it through special tubes in his arm.
While Lily visits Henryk she gets to read books with Mama, color, and pretend to be one of Henryk’s doctors.