When I got off the phone with them yesterday regarding this issue, I looked at my daughter and said, "Gracie, we're not in Minnesota anymore." :(
This is exactly what I was talking about a few post ago when I said I was anxious to leave Minnesota for the next 2 months. As I have told many people since I have been home, I have never experienced the level of care that we recieved at U of MN in my life. Most of my special doctor stuff for myself and my loved ones has been at Shands and the treatment they give seems to have always been the same. I never thought to think of it as substandard... until now.
It angered me so much that Gracie's treatment was so carelessly juggled around by these people. The truth is that its not that hard of a treatment to do. They mix up the enzyme meds, put them in an IV bag, hook it to Gracie's central line, start it, and then monitor her vitals for several hours as she recieves the meds. Really not a tough job. But they will charge our insurance out the yin-yang for it and get paid quite a bit to do this. So I know money is not the issue. Its just carelessness. While my daughter is the top priority and single most important thing in my life, they made it painfully clear that she is not a priority in theirs.
Whats funny is that I never once felt that way in Minnesota. As a matter of fact I often wondered if they had any other patients besides Gracie. :)
My intention is not to have a Shands-bashing party here, its more to show that we don't have to accept this kind of treatment as status quo. I know what healthcare is supposed to be like now- and for my precious daughter, I will not settle for anything less.
I hope that all of our adoring public does the same for themselves.
And to end this post on a good note....
Thats the Peanut enjoying dinner at a nice little Irish Pub we found near the U of MN. We actually were trying to get Italian that night, but this place ended up being pretty yummy for the grownups. Don't worry about Gracie being left out, I think she had sweet potatoes that night. Yum Yum!
14 comments:
I can't view the pic as I am at work but I am angry for you. I hate people/doctors/hospitals who arn't people centered which means they view things in numbers, names and statistics rather than actual people with people who love them and care and are worried sick and who would go to the end of the earth for them. I agree I get annoyed with some of the kids I work with at my school, but then I think if it was my kid and how I would want someone to treat them and I just take it for granted that others will do that too.
That pic is ADORABLE!
You are right about MN. They are amazing and I have been working hard to make sure Lauren gets as much of her care through them as possible. When we did ERT at home, we did it through our local chapter of St Judes. Those nurses are used to woring with children and did an amazing job with Lauren.
Still, once you have been to MN (as far as I can tell) nobody will ever measure up. We first met with Dr Orchard and he spent easily more than an hour explaining everything in detail. I had NEVER had a doctor before who came in and didnt check his watch once while I asked question after question.
U of MN is opening a new children's hospital in 2010... because they want to be BETTER! Amazing.
OMG that pic of her is just adorable Sarah!
As for hiccup #1 I'm so angry for you! As you said, now that you know what the standard of care should be from your time in MN this is just not acceptable. Do you have other alternatives? I hope so because if this keeps happening then obviously it's time to move on.
That kid looks so much like her mother in this picture it's scary! Love you.
ok I checked back. I love her so much!
I'm sorry to hear about your experience, it sounds like the folks at Shands are in desperate need of some "customer service" training! It always amazes me how thoughtless some folks in the medical field can be at times. Your are under enough stress, you should not have to deal with this kind of BS (sorry, the thought of Sarah and Gracie going through this makes me upset)...are there other places you can go?
One more thing...thank you for the great photo of Gracie - she is adorable! Give her a hug from me...
Too cute!!! The hat is the best!!
I'm right there with you on the medical care thing and will hold my tongue (gee what a surprise!!)
Smooches :)
I am in agreeance, they need to learn some coustomer service. I too am angry.
That picture is the most adorable thing. I lover her little hat!
Special Sauce!
You are the cutest. Van is practicing hard, so one day he can grow up to have as cute a smile as that--
If she acts cute like that when Nuvy's down there, though, Nuvy will probably eat her!
See you soon!
xo
Hys
Ah! That infectious smile is so wonderful to see! (And I still want to kiss Gracie's cute little baby chin.)
I can't believe they'd treat you like that! I'm under the impression that the field of medicine is undergoing a revolution, where good places are realizing that great patient care (which includes honesty and apologies) IS good business. It sounds like what's happening at Shands is not only immoral, but archaic. Ugh. I hope you find someone there to be an advocate for Gracie with you, or that you can find another option while you're in FL.
- Dana
Shands is the pits. One time I had to take my sister to the ER, with what we thought was appendicitis. We were there around 12 hours, at least six or seven of those in the waiting room. It turned out she had an inflamed spleen or something due to mono, but if it had been appendicitis, her appendix could have ruptured while we were waiting. And no one really seemed to care. Someone else I know went because she was having a miscarriage, and she was left in the waiting room around the same amount of time. Shands doctors may be good at what they do, but they suck at being nice people. Reading what you wrote has reinforced my commitment to only ever go to Shands again if I am hit by a car on their front doorstep.
So all of that was pretty much just to sympathize. I hope Shands gets its act together for y'all. Cary and I are praying for y'all and Gracie especially. I'm glad that things have been going pretty well otherwise. If you have some free time on one of your trips to Gainesville, let us know and we'd be so glad to see you. We love you!
MmmHmm.
I keep hearing about the great doctors with the awful patient care record at Shands.
I do not believe you can claim to be a great doctor if you don't take care of your patients. People who fail to provide even palliative treatment, much less proactive treatment, when patients present themselves needing it (from helping someone through a miscarriage--not much you can do to make it go away, but the lady still needs care!--to arranging to have the tools you need to treat a very sick patient who needs very specific treatment, as in Gracie's case) might have gotten A's on all their gross anatomy quizzes, but they are in no way great doctors.
To a certain degree, one can blame the office managers, but it's hard for me to believe that this is not endemic to the culture of DOCTORS at Shands. I have heard the same story from patients in many, many specialties at this hospital, and now similar anecdotes from emergency.
This is not what good doctors do. If you want to tinker with people's delicate and necessary personal machinery, use fancy tools, not be held to a schedule, and charge big bucks for your services, go into auto mechanics.
Gracie is absolutely adorable! All of her pictures are soooo cute!!! We are praying for your family and know that God is able to work miracles.
As for Shands, unfortunately, I have to jump on the "Shands sucks" bandwagon for a brief moment. Their OB/Gyn department is a HOT MESS! I have personal experience with the sad level of care that they offer thier patients. The doctors fail to realize that each patient deserves more than a glib once-over and quick and useless explanation of what is going on. We deserve attention and heartfelt care for our individual situations.
Sadly, as in Gracie's case, I keep hearing other stories about the poor level of care in other Shands departments. I even have a friend who is a medical resident on rotation at Shands and he is amazed at the arrogance and lack of respect that the Professor / Doctors have towards their patients. Gone are the days of "bed side manner" for most of these medical professionals.
This is why I switched my OB/Gyn care to North Florida Regional Medical Center. My experience there is nothing short of fantastic as all the staff (from the check in counter at the front desk to the doctors) are all caring and knowledgable.
Is it possible to switch care for Gracie to North Florida? I do not know if they have specialized doctors for Hurler's there...but it may be worth looking into. Just a suggestion...
Medical issues present enough stress as it is...you deserve a caring and knowledgable staff to help you though the process...
Love you all much!
~Najah and Elliott
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