Saturday, May 14, 2016

The Value of Coordinated Medical Care


When Davy was born, I thought everything was fine.  He sucked his bottle kind of weird, but I was sure he'd get the hang of it soon.  And yeah, he had some dysmorphic features, but they made him cuter.  And the crying...well some babies were just fussy, right?

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But by the time he was a week and a half old, it was obvious that something was wrong.  He started refusing the bottle and became increasingly fussy with bouts of screaming.

Davy's doctor quickly exhausted her resources as he continued to worsen.  At 2 months of age, he only weighed 8 pounds and was eating 7-8 ounces of formula in a 24 hour period, and so she made the decision to hospitalize him. During that 9 day stay, Davy had surgery for a G Tube placement.  When we left the hospital, we had appointments scheduled with several specialists.



Within a short time, our lives were dominated by doctors' appointments.  We were told that we were lucky to live close to a world renowned hospital and clinic where Davy could be seen, but we quickly became disillusioned.

Davy's specialists were not on the same page, and there didn't seem to be any communication between them.  Because the clinic was so big, their offices weren't located near each other and were usually not even on the same floor.  The pediatrician was in a different part of the city completely.  Davy was assigned a care coordinator, but she only worked at the pediatrician's office and so wasn't fully aware of what was going on at his other appointments. 

After 9 months, we were beyond frustrated and no closer to getting answers for Davy's growing list of health concerns.  I was tired of fighting to be heard by the doctors and having my questions dismissed.  The final straw was when we were discharged from the hospital after a one night stay for observation of fever and respiratory symptoms even though his vitals hadn't improved. 


The next day, Davy was still very sick and struggling to breathe so we decided to take him to a different urgent care.  The drive to Gundersen Lutheran in La Crosse, Wisconsin was twice as far for us, but we figured we had nothing to lose at that point.

I was amazed at how seriously the urgent care doctor took our concerns.  She disagreed with the diagnosis of worsening pneumonia he'd received just two days before as his symptoms didn't fit.  We left that visit with instructions to discontinue his antibiotics (which weren't helping anyway), new ways to treat his symptoms, an RSV diagnosis (which the other hospital hadn't tested for), and an appointment with a pediatrician so we could get referrals to all the specialists Davy would need to see.  Because of his medical complexity, Davy was assigned a care coordinator who attends just about every appointment and is just a phone call away to answer any questions (and I've had lots!) 

I was blown away by Davy's new team of doctors, and it didn't take long at all to see the benefits.  At the previous health care system, team was the last word I'd have used to describe the doctors he saw.  Within a short time, we were getting answers for Davy's health, and he was showing improvement.  He was diagnosed with a connective tissue disorder which led to 6 year old Nano and I being diagnosed with Ehlers Danlos Syndrome.  Davy can't be officially tested for it until he's a bit older, but we're operating under the assumption that he has it as well. 

The pediatric specialists at Gundersen Lutheran work in the same department in close proximity to each other, something that wasn't possible at the other clinic because of its large size.  They have monthly meetings to discuss the care of their shared patients.  Many times, we would be at the clinic for an appointment with one doctor, and he or she would want to discuss something with one of his other specialists so would ask them to stop in during the appointment.  At one point, we had three doctors in the room discussing Davy's care even though we only had an appointment with one that day.

The coordinated care includes us as well.  Davy's geneticist once told me that I am just as valuable a member of Davy's team as the doctors are, probably even more so since I am the one who knows him best.

Tweet: Find out some of the benefits of coordinated medical care: http://bit.ly/1WMsImN @SunshineNSpoons   

These are just some of the benefits we've experienced from having doctors who practice coordinated care:
  • They look at the whole picture instead of just the symptoms that go with their specialty, which makes it much more likely to get a diagnosis.
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  • They're aware of the other specialists' treatment plans and incorporate them into their own treatments.
  • They talk to each other to get ideas for new ways to handle medical care.
  • They are more likely to stay on top of testing and other procedures. 
  • The patient and their family feel more engaged and understood because the doctors include them in the process.
Have you had an experience with coordinated care or a lack of it?  How has it affected your medical care?






This post was also published at Feeding Matters
This post is linked up at 1. Mom's Small Victories 2. Raising Samuels 3. Mummy Do It 4. The Modest Mom Blog 5. What Joy is Mine 6. Donna Reidland  7. Our Home of Many Blessings 8. Marilyn's Treats 9. Smart Mom Smart Ideas  10. The Joy Chaser  11. DebCB    12. Rich Faith Rising 13. Sweet Little Ones  14. Live Randomly Simply 15. A Wise Woman Builds Her Home 16. Classical Homemaking  17. Marilyn's Treats 18. You're So Trendy 29. Raising Samuels  30. Holly McBerty 31. Cord of 6  32. Being Fibro Mom

17 comments:

  1. What a difference it makes to communicate! And to have the humility to listen to others. I love that they recognized (and voiced) the importance of listening to you and your knowledge as his mother.

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    1. That definitely made a huge difference on the trust level I have with his doctors! Thank you for stopping by!

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  2. Hannah, you and your family are so blessed to have found this level of medical care. Long story, but when my Mom was dying, I became even more disillusioned with the health care system than I was already by being an RN's daughter. A doctor told her she needed to get up and walk around during her last week. Background: She was dying of Multiple Myeloma, had a broken leg, ribs, shoulder, and several other bones (thus, bedridden) and the cancer and the drugs had affected her mind. She tried to get up and walk and fell. The doctor wasn't her doctor and never read her chart on the door, let alone coordinated with anyone. Her entire experience was a series of that kind of crud. So, I am doubly happy for you that you were able to get out of that cycle. Thank you so much for sharing with #ShareTheJoyLinky!

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    1. That's awful! I'm so sorry that your family had to go through that.

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  3. We have some sweet friends that foster children with special needs. I'm wondering if they have ever heard of this? It's certainly new to me. Thanks so much for sharing at Waiting on...Wednesday!

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    1. Coordinated care makes such a huge difference. I don't know if it's an actual "product" that health care systems sell, but it's a way of treating patients and their families that makes it much more effective.

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  4. I am learning and dealing with this same issue right now. Thanks for sharing at #WonderfulWednesday! Pinned and tweeted.

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    1. I'm so sorry you're dealing with this! Coordinated care can make such a huge difference in a patient's quality of life.

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  5. Hi, Hannah! I am so glad you were able to find this better team of doctors! We moved and we tried to find doctors closer to our house, and I decided it was worth the drive to our old doctors who were so much better! Thanks for sharing with #SocialButterflySunday! Prayers to you and your family. Hope you will join the link up party again this week :)

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    1. Yes, a longer drive is definitely worth it if the care is better! Thank you for visiting!

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  6. Congratulations! Your post was my feature pick from my Commenters at #WonderfulWednesday this week. Visit me on Tuesday evening and to see your feature and pick up your badge! I invite you to leave more links to be shared and commented upon.

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  7. When I was eventually diagnosed with fibromyalgia, my physician immediately formed a coordinated care team. It was my first and only experience with a care team, and though hesitant at first, I grew to love it. Despite being in different locations, they worked flawlessly to get my well again. I began to move more, my pain went from a daily 5/6 to a daily 1/2, and I was playing again with my children. Once we moved away and I was forced to discontinue care, my pain levels went up again and my moving was limited. I have managed my care on my own, but we are currently working on moving back to be closer to that care team.

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    1. You're proof of how well the coordinated model of medical care works! I hope you're able to move closer to your original care team!

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  8. There is so much value in having a coordinated team of specialists on the same page and willing to communicate and work together. In my son's case, our pediatrician was a fantastic coordination point for our ophthalmologist, dermatologist, psychologist, OT, speech and GP. I also saw this in action when my Dad was diagnosed with cancer and required significant surgery and treatment that brought a plastic surgery team, speech therapy, oncology, radiology, chemotherapy and later a palliative care team together. The last thing you need as a parent or carer is the worry of trying to be the middle man between them all - a coordinated team is worth its weight in gold!

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  9. I am totally in favor of this article and just want to conclude that you are really doing a great job. Pharmacovigilance

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Thank you for your comment! I read and try to reply to every one :)