Monday, March 27, 2006

Baby Thomas

Baby Thomas – The patient experience is one of the best tools we can use to measure the overall quality of the care we provide; but too often, the actual patient experience gets lost in patient satisfaction scores and graphs. That is why we should take a step back every once and a while and actually talk to our patients. In that spirit, I am pleased to share a very moving and insightful patient experience.

Some friends of ours told us about the Bickle’s and directed us to their website. The Bickle’s, of Dallas, Texas, are going through an incredible, and heart-wrenching, experience. They have a 6-month old son, Thomas, who was diagnosed with a brain tumor. You can read more about Thomas’s story and how he is doing on their website, The Official Thomas Bickle Blog. I recently got the opportunity to communicate with Sarah Bickle, the mother of Baby Thomas, and she agreed to share some of their experience with me.

What follows is a series of questions I asked Sarah about their experience in the hospital and with their care givers. Sarah was kind enough to offer some very thoughtful and candid responses. Due to the length of the questions, I will post the second half of the questions on Hospital Impact tomorrow.

Describe the hospital room that Thomas is in?

All of the rooms that I've seen in Children's have a window and at least a couch for parents. One wall is painted a color like lavender in a wavy shape that goes around the room. There's a wipe board where staff for the day writes their names and a sink and a computer for staff that folds away. Thomas's crib has his name on a decorated piece of paper above it. The rooms are well-thought out; even in ICU we had a little shelf in the armoire that holds the TV to put our belongings in and there are 2 drawers under the bed/couch (in ICU, it doesn't fold out, but it is wide enough to sleep on).

What has the hospital or nursing staff done to make you more comfortable?

Writing their names on the board each day and night makes a big difference - even if we know our nurse we may not remember her name at 3 a.m. When we first arrived, the neurosurgery floor made it a point to let us know where the family kitchen was, how we could store food, what the cafeteria and chapel hours were, and things like that. The floor manager and some kind of customer care representative also introduced themselves in the first day or so, so we felt like we knew where to go with questions or needs from the beginning. Finally, the staff was just great with our son. I can think of 3 people out of probably close to 70 staff members we've seen who didn't seem genuinely thrilled to be with our son - and I include housekeeping in this list as well. There's no way we would've been as stable and functional as we are now if we hadn't had such an amazing staff and hospital system.

Do you feel like you are a part of the decision making process when it comes to the care and treatment of Thomas?

Definitely, especially when it comes to pain. I’ve never really had to defend a request for pain meds to anyone. They listen, but they take my word for the fact that Thomas is in pain. That was a big relief.


  • Thanks for your post, Andrew.

    By Blogger sweetpea, at 6:03 PM  

  • Thank you, Andrew!!!

    By Blogger Wedding Girl, at 7:59 AM  

  • thanks for connecting us to this.

    By Anonymous tony, at 8:25 AM  

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