Tag Archives: health

Rough Patch, Part Three

March 3, 2019 By in Healthcare, Noonan Syndrome-Like Disorder, Our Family's Journey Tags: , , , , , , , 1 Comment
Rough Patch, Part Three

If you haven’t read the rest of the story yet, start here.

We loaded our son into the car and left for the hospital. It was dark and rain was pouring down throughout the drive to the emergency department. Check-in went quickly. Our son was exhausted and still showing signs of difficulty breathing so it didn’t take very long to be seen. A chest x-ray was ordered immediately and we were settled in to wait for the results. No one seemed particularly concerned so we did our best to relax and wait. We expected to be given antibiotics and sent home.

The nurse came into our room and asked in an unusually timid manner if our son had been seen at one of the other hospitals downtown. We explained a consult we had at one point with an interventional cardiologist, but that we only went once and that doctor recommended against running any tests. I mentioned to her off-hand that we had also done several second opinions at Hopkins. “Why do you ask?” was the next obvious question. Micro expressions danced across her face, all showing signs of discomfort, and she pointedly avoided eye contact. We were to be transferred and they were deciding where. The doctor would be in shortly to answer any other questions. With that she ducked out, having not made any additional eye contact.

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Rough Patch, Part Two

February 25, 2019 By in Healthcare, Noonan Syndrome-Like Disorder, Our Family's Journey Tags: , , , , , , , 3 Comments
Rough Patch, Part Two

If you didn’t catch the first part, read it first.

We were waiting for many months for a call from Kennedy Krieger’s Outpatient Feeding Program. It’s not something I had mentioned previously; I wasn’t sure how helpful it would be. When the call finally came we were so excited. There was, however, a massive “but.” Our son had begun struggling with a new medical issue, ITP (Idiopathic Thrombocytic Purpora), and we weren’t sure how well he would do in the outpatient program given the need for weekly blood draws and hematologist visits. After speaking with the program’s nurse we concluded that, while difficult, managing his care on an outpatient basis was possible. If we were already actively in the outpatient program and he needed to be transitioned to inpatient they would do their best to have us transitioned to inpatient as quickly as possible.

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ALMOST Time to Get Your Flu Shot – but Not Yet!

September 18, 2016 By in Caregiver Health and Wellness, Healthcare Tags: , , , , 2 Comments
ALMOST Time to Get Your Flu Shot – but Not Yet!

It’s flu shot time again. The CDC has key facts on their website about the shot if you have any health-related questions. There are a few places you and your family can get their flu shots.

  1. Most pharmacies are offering them on site.
  2. Your child’s pediatrician may provide the shot through a nurse visit which I’ve found to be both faster and less traumatic for my son.
  3. The Dr.’s office is also an excellent way to get it if you’re already going in for something. They can just give you a dose while you’re there and have it over.

It does take a little while to provide protection so you’ll want to get your flu shot sooner rather than later. However, you may want to wait until at least October before getting the shot. It’s especially important to hang on a little longer if you’re over 65. See the NPR article for additional details.

Yes, it is Possible to Get Your Flu Shot Too Soon – NPR

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Teaching Our Son’s Immune System

May 13, 2016 By in Our Family's Journey Tags: , , , 3 Comments

We spent almost two years keeping our son away from anyone who was contagious and many people who might be. It was for good reason. His weight was precarious and when he got sick he got REALLY sick. A normal illness would take twice as long for him to recover from as it should. Meanwhile, he would vomit more food just as he really needed the extra calories.

When we first heard we could get him out more and worry much less about illness we were really excited. He could go to play groups. He’d be able to play with other kids his age at church. It sounded like it opened so many doors! In reality, it’s been a bit of a nightmare. He still takes a long time to recover from many illnesses. If we catch something at the same time he’ll be struggling with it days after I’m better and it will eventually settle into his ears, nose, and throat.

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4 Tips for Dealing with Case Management

March 13, 2016 By in Caregiver Tips & Tricks Tags: , , , , , , , , Leave a comment
4 Tips for Dealing with Case Management

This week the case for our son’s feeding supplies and his formula was approved by the insurance company. We changed companies the first of the year and I began working to get the case set up with the new insurance company prior to the swap. Approval came almost exactly three months to the day after beginning the process.

Why did it take three months? Many, as in more than four or five, well-intentioned people thought they knew how to take care of the case and it turns out they were wrong. How could so many people be wrong? Some were new and simply didn’t know the answer. Most had been at their job for a while but things had changed and no one bothered to inform them. Everyone I spoke to was trying their best to help.

If you’ve never gone through this process before it may come as a surprise. Three months is actually not that bad to get everything in place if you’re changing insurance companies. Having a child with medical needs which require case management approval makes changing insurance companies complicated. Now that we’ve gotten through the process I feel comfortable sharing some tips on managing insurance companies, case management companies, supply companies, and frankly any large organization.

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