Please know that if you are my Facebook friend, you may or may not see me very active. There are times when I simply just can't check in on all the funny and happy details of everyone's life. Thanks for understanding. Therefore, if you are looking for information relating to Bernie's status it will be certain that you will need to visit this blog or the Care Page. For me personally, updating Facebook is not where I would like to directly display such significant medical information. I may or may not post a link there to the blog/Care Page when there are updates. The most reliable way to be notified of updates is to select that preference on the Care Page and you will get an email when there is something to be communicated.
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. 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 her care team or other hospital employee. They just are not allowed to tell you and can lose their jobs for sharing such information.
In the event that you would like to visit (we usually love visitors!), there are different security measures at the new hospital. Healthy visitors need to be badged before you can enter any patient care area. 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. We did not really have this option at the old children's hospital and it's very much worth the $5. 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 something you may bring or act happy you are there. She is just likely to be miserable, especially as she has to sit there waiting for 2 days not knowing or fully understanding what's going to happen to her. I hope the service dogs make lots of stops in our room!
Monday's Admission
Bernie will be admitted Monday afternoon, May 11. It will likely be traumatic and quite an adjustment for her. She will have to be admitted and have IV heparin for a couple of days prior to any procedure to make sure the Coumadin/Warfarin clears from her system. Remember it's a tricky drug that takes days to get on and off of.
How can you help?
We are so glad to have such an incredible support team! It makes such a difference! In the event that you would like to provide a meal (not necessarily a problem if you don't live in Traverse City), you can email Lori Niemer (lniemer@yahoo.com) and she will send you the link to our meal organization website. Thank you in advance for helping to feed a busy working dad and kids on their own for a while!
Jeff and the kids will be traveling downstate (500 miles round-trip) every weekend. We will have obvious travel and lodging expenses, especially if we do not get a room at the Ronald McDonald House or the Med Inn (neither of which look likely at this point). I will be in Ann Arbor until Bernie comes home. You can email me (peetiesmith@yahoo.com) if there's something you'd like to contribute relating to travel.
The Soak Tub
It is unclear how long we will need your assistance. Don't feel as if you need to pull out all the stops right away. We know things can drag out for months and there can be lots of unexpected turns. Save your strength!
Just before Bernie was admitted under emergency circumstances for her last open heart operation in July 2008, I had put a couple of clothing items in a bus-boy tub in my bathtub to soak in about 5 inches of water. I shut the shower curtain. By the time I came back home to once again get back to doing laundry at the end of September, I opened the curtain and those same clothing items in the tub were dried up, stiff, and standing up in the tub completely on their own. This offers you some perspective how life around the house just kind of stops and hospital life can go on for much longer than expected. We really hope it doesn't, but have to prepare mentally for this. We all must pace ourselves.
Thanks for the love!
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