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Medically Fragile Child

15 Ways to Help a Friend With a Sick Child in the Hospital

As the mother of a child who spent many weeks in the hospital, carrying frequent flyer cards in the ER, OR, ICU, NICU, PICU and TICU at Children’s Healthcare of Atlanta, I want to pass along a bit of knowledge for those who are feeling a lack of direction about how to be a good friend/family member/support to someone who is also facing a child’s critical illness.

My son, Hoyte, was born in 2010 two months premature with a host of birth defects, needing emergency surgery and later suffering infections and complications that took us by surprise. We didn’t see any of it coming – our feet were knocked out from under us many times for several years.

Luckily, Hoyte just turned 3, and I am feeling somewhat normal again as he has gained strength through maturity and medical intervention.  And so I can write bit by bit about what I wish I had known – and what I wish others had known.

While we were going through the most critical days we had unbelievable amounts of love, support, and prayer from our family and friends, and I have so much gratefulness in my heart for every word of care, every morsel of food and every whisper of prayer that helped my baby – and us – survive a times when the odds were against him.

But as the weeks and years went by, part of our journey was walking through the road of changing friendships. We encountered severe ups and downs for 2 straight years it seemed, and had some people close to us not really know how to respond. Fact is, we struggled, like so many of you have, with the lack of understanding with those who had never walked a similar road to us. Fact is, I know that no one really meant to hurt us, but hurt inevitably happened, leaving us feeling quite isolated at times.

As a result, we learned to turn mostly to each other and that very small number of close friends who could truly relate to what we were going through – and those are our closest friends to this day. In hindsight, I wish that I had been more honest, and so that is what I am offering you today.

Continue Reading…

I Was Grounded on Mother’s Day … and So Grateful

“You can’t plan life. Because no matter how perfect your plan is, life has a way to rearrange it.” ~Mina Deanna

Yessirree, all of us with kids know that weekends often do not turn out AT ALL like they were supposed to. Not even close …

With Outlook Calendar in hand and finger on the dreaded “Delete Event” button, I found myself cancelling the weekend as whole …  because I was grounded and at home from the start … regardless of the plans that were made.

Like many of you have done, I spent the majority of Mother’s Day weekend curled up in the bed with my 2 year old son, Hoyte, after he was diagnosed with pneumonia on Friday night. This felt like the old days, with his sleeping upright on my chest, whimpering with each cough, damp with fever,  struggling to get the oxygen into his lungs, while needing nebulizer treatments every couple of hours. It is weekends like these that blur the sunrises and sunsets into one foggy memory of medicine, catnaps and wrinkled sheets.

Hoyte & me - curled up in bed with his nebulizer treatment

If you have read previous posts, you would know that Hoyte was born with birth defects in his upper GI system and airway, which make him medically fragile and prone to lung infections. So, just when we thought we had gotten through our first viral season without a bout with pneumonia, BAM.

There we were Friday night, Hoyte, me, and his much-traveled medical journal, in our old familiar weekend hot-spot, the ED at Children’s Healthcare of Atlanta at Scottish Rite. Just when I had started to get used to his system being’ just a bit stronger,’ and his infections being farther apart, we got hit with a doozy of an infection.

Hoyte at CHOA on Friday night with Resp. Therapist, Larry, getting the bubble treatment Continue Reading…

Happy Nurses Week!

“To do what nobody else will do, a way that nobody else can do, in spite of all we go through; that is to be a nurse.”  ~Rawsi Williams

Today is National Nurses Day, and this week is National Nurses Week. During these days, let’s thank our nurses for the life-changing work that they do as they follow their calling to help others feel better.

Today, I have a parade in my heart, cheering and throwing confetti in joyful gratitude for the nurses that have helped us personally. They have indeed made all of the difference in our lives as we have gone through many days and nights with our son, Hoyte, in the local Children’s Healthcare hospitals and have found that it was indeed the nurses who made all of the difference. I was raised by a mother who was an RN and is still a Parish Nurse as a minister, and I have always been amazed by the patience, knowledge and passion for caretaking that is in the heart of a nurse.

It was the nurses who were most definitely CALLED to do what they were doing, that brought hope and clarity in through the hospital room when our fear and lack of knowledge made us feel like the ground had gone out from underneath us as we watched helplessly as our son struggled in pain. I wanted to share just a few of the hundreds of stories of care from our NURSES along the way … Continue Reading…

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