Support Team Housekeeping Notes

Thursday

Surgery is scheduled for second case and should begin around 1:00.  We will be admitted on Thursday morning.

Meals and Food

Thank you to all of you who so generously have offered to help provide a meal, take some kids, or just about anything.  It means a lot.  We have a "Meal Train" set up and if you are interested in helping out in the food department you can click here. A new addition to this link is a button to just send some good old fashioned cash as eating at the hospital (if you're not Bernie), transportation, eating at restaurants with 5 people, and incidentals all add up. Thanks in advance if this is a way you can and want to help.

Watching "Moana" before the fire alarm.

HIPAA

Most people understand HIPAA, but just know that Bernie's doctors, nurses, or any other employee of Mott Children's Hospital are not allowed to disclose information about any of the patients to just anyone.  I can basically say whatever I want, but in the event that I do not provide information at a rate or in terms of content that satiates your curiosities, please do not try to get information from Bernie's care team or other hospital employee.  They just are not allowed to tell you and can lose their jobs for sharing such information. Likewise, they are not allowed to tell you about what may be the matter with other patients who may be close to where Bernie is staying.

Similarly, this blog is where accurate and reliable information will be posted in a timely fashion. If it's not up here, there's nothing more to know at a given time. Check it as often as you like, but there will be no "back or bonus story" available via group text or email chain.

Sisterly love.

VISITORS

In the event that you would like to visit (we usually love visitors!), there are several security measures in place.  Healthy visitors need to be badged before you can enter any patient care area.  Do not come if you have any cough, cold, or flu-like symptoms. You will have to check in at the front desk in the main lobby of the hospital and again at the security desk on the floor you will visit (we will be on both floors 10 and 11 during our stay).  Valet parking is the way to go in my opinion, but it is frequently full.  P2 is the name of the structure in which you can park yourself.  I cannot guarantee Bernie will be smiles and sunshine and she may just be ornery.  Don't take it personally if she doesn't openly love seeing you or something you may bring or act happy you are there. 

Knowing What to Say

I've used this article in some of my work with families both in my professional and personal interactions. If knowing what to say is not easy for you, this provides a nice way to at least tell you how to not say the wrong things. It's great for a variety of crisis situations that don't even have to be medical in nature. It's worth the read if you want to click here.

Random dancing with Lucy at home. 

What Bernie Likes Lately (in no particular order)

The movie "Annie", Paw Patrol, shark pictures, the movie "Moana", pop music, chocolate, Fergus, swimming, animals, cheeseburgers, matchbox cars, her parking garage for the cars, her sisters, sleeping in the kingdom, her cousins.  I'm sure I missed a few. Feel free to post pictures with #healthebern attached to them on Facebook or Instagram with any message or greeting for Bernie and I will show them to her periodically as looking at pictures that include people she loves, herself, or above references is really fun for her.

Sending Stuff

Our mailing address:

Bernice Smith
Michigan Congenital Heart Center
C.S. Mott Children's Hospital
1540 E Hospital Dr 
Ann Arbor, MI 48109

Thank you so much for your love and support during this challenging time for our family.  We know lots of you have been following our story for a healthy 9 years. If you're reading this far and/or for that long, you must not be sick of us yet and for that we are grateful.  Godspeed and Go Blue.