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  • Shelly Roberts

Grasping Hold of Life

There are moments in the life of medically fragile kids when it seems as if you have one hand holding onto life and with the other you can almost feel it slip away. We had just gotten our daughter a new, safe way to breathe ... but it wasn't enough. While her airway was now not collapsing on us many times a day, her insides were so tired and weary. As her momma, I'd spent eight months out of the last twelve trying everything I knew to keep her broken bowel partially working. We did all the things. Things that aren't in any medical textbook. I found myself in a near ethical dilemma each day ... I was pumping food into a body that couldn't rid of it. It was causing other physical issues to resurface. Finally the time came that we waved the white flag and hauled her into the hospital for more testing, an admission, and another bowel surgery.

To get to this place though we'd exhausted every option. Weeks had turned into months with so many messages to providers and endless pictures of a broken belly crying out for help. The night before we hauled her precious self in my husband and I sat collapsed on the couch trying to distract ourselves with some TV drama. Cheap therapy we are not ashamed of. From my place on the couch I could glance over to her room and see her quiet body and most beautiful face resting peacefully for awhile. But each time I glanced over I'd break into tears as all I could think of was "this is how she'll look if she doesn't make it this time". Then images of our surgeon's face would flash through my mind - will the day come that he'll have to tell me there's nothing more he can do for this girl we've tried so hard for? I wanted to cancel the plans and just keep her home. I was so afraid we'd lose her. But I knew I couldn't do it anymore. She simply couldn't keep going like this.

Morning came really early. Testing was completed. We settled into our hospital room and it was determined there would be no surgery. We'd held onto our last bit of hope there was something that could be done. That's what surgeons do. They fix things. We were beyond devastated. Evening came and we went over the altered plan for our girl. Hearing our surgeon's deeply conscientious thought process helped ease the heaviness a little bit. Yet we'd barely been hanging on by a thread for so long that I just struggled to find my second wind. Friends linked arms with us both near and far and assured us of their prayers for our girl ... and for us. Hospital staff came and checked on us and assured us we weren't alone. So many were doing everything possible to give our girl her very best life.

A new day began and brought with it one of the best medical interventions - a PICC line. Our girl would not only have a new way to breathe now, but also a new way to be nourished. We went through a feeding trial process, that we failed, which then enabled us to come up with a more long-term plan which would include HOME. Total parenteral nutrition (TPN) is a method of feeding that bypasses the gastrointestinal tract. Specifically combined fluids are given into a vein to provide most of the nutrients the body needs. This method is used when a person can't receive feedings or fluids by mouth or through their stomach. Both of our complex kids have been on the receiving end of this type of nutrition, but only temporarily. Extensive TPN use brings with it a lot of possible complications and less than optimal outcomes to other organs. We saw the weight of this decision on the faces of the rest of our medical team. But as one of our doctors expressed with a heavy heart, there just isn't an easy fix to a bowel that won't function. I hadn't even thought about the fact that while we had come to terms with where we had landed - our medical team would have to as well.

Through this process we narrowed down our greatest goals for our daughter. The one most important to us was that we could bring her back HOME, to be surrounded by her people for all of her days. Second was that she could be comfortable. It seemed like such a small list at the time. A list so different from what parents typically have for their nine year old child. Our team rallied in record time to get everything set up for us to care for our new-improved {once again} daughter. I joked with the staff that maybe someone had put a note on our chart saying to "give mom her favorite nurses because she's fragile right now}. Ha! Our amazing 4th floor staff taught me everything I needed to do. I felt incredibly empowered as I did my first PICC line dressing change and set up her daily intravenous feeding. There are times it's a perk to be an absolute germ freak. This was one of them.

While there was a winter storm brewing all weekend, we did indeed make it home. Within the first 48 hours though our daughter's condition worsened beyond anything we'd previously seen yet. She was so very miserable and as I looked at our two main goals list, it felt like we were once again failing. More calls to our providers helped us adjust the plan and we saw the most beautiful transformation unfold. We've now had four beautifully stable, thriving days at home. Our girl's face is bright once again and filled with wonder as she listens to her sister sing her heart out.

One of the things that being a medically fragile mom has taught me is this - savor the moments. We experience first hand that you just can't take time with your child for granted. Our girl's body might decide this new way of life is just fine and we could have many many years ahead of us yet together. Without a doubt, she has taught us to savor the moments we do have ... to treasure the gift of life ... and to cling to the One who gave it.

Lord, indeed you are the giver of life. Help me live my life in a way that brings you glory. Direct my days according to your plans for me and help me never get so caught up in the daily grind that I miss what you have for me to see.

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