Medical hardships demand time, money and emotional strength for a long period of time. The transportation, basic living expenses, therapies and special education needs are not often covered by insurance and take a lot of time away from both work and family. Learn about an incredible organization helping to ease the burden for families like ours.
Every picture tells a story, but some pull us in more than others. They make us wonder what hilarious or heartbreaking thing just happened, and or ponder what’s about to happen next. I wanted to tell our story through our photographs taken during our last inpatient admission at Boston Children’s Hosptial.
Hey friends! I get so many questions about Adeline's feeding tube, so I thought I would compile them all into one place. If something is not covered here, please reach out to me because I would love to hear from you.
Dressing a child with a feeding tube comes with its challenges. Where does the tube go once the clothes are on? If you have to access the tube, do you have to undress them completely? When they become mobile, how do they carry their own feeds? If it's hot, how do you keep the formula at the right temperature? I've been rigging clothing myself by cutting holes in her clothes, I limit the types of clothes she wears, only button up pajamas, no zippers please, etc. But it's not perfect, the hole gets wider with wear and I cannot sew like some of these creative tubie Mamas. I decided to check out some brands that make adapted clothing and other feeding tube accessories to make our lives easier and make our kids safer.
Traveling with a medically-complex person is a lot of work. It can be overwhelming and sometimes terrifying. This past May we took our first family vacation to Cabo Rojo, Puerto Rico with a toddler who’s on both Parental and Enteral Nutrition. Although I knew we needed a break, time to get away, quality time together as a family - I was scared #af! I’d be a complete hypocrite if I said I didn’t think about canceling the trip 100 times. When we left the runway, with her home team getting smaller and smaller behind us, I felt a combination of anxiety and nausea. Scary stuff.
Having an infant and now toddler with TPN presents many challenges. One of the most stressful can be keeping her line from pulling. Ask any mom with a toddler who moves on TPN and they will tell you its rough! After 7 line breaks in 13 months we knew something needed to change. We started using Gus Gear Central Line Wrap and it made a positive difference in our life. Not only has it reduced stress, it has increased Addie's safety and make sure she is better protected. I wanted to share why we love Gus and Gear and why every child with a central line should have one...or a few!
Having a child with complex medical needs is never the plan, but rather something into which you’re thrown, head first. When you have a child like Addie, it’s important that you advocate for her ferociously. My role as an advocate for her started in the NICU -It was the first time I really thought that I needed to question the plan. These professionals weren’t seeing what I was seeing. I needed to voice my concerns. It was at that moment I stepped into the role as mother AND advocate, and I haven’t stepped out since!
Because of injuries she had to her gut in her early life (NEC, colonic stricture, malrotation/volvulus), Addie has short bowel syndrome. This causes most of the issues she has with eating and growing and even with the feeding tube and an elemental formula, she can’t tolerate enough calories to grow and she gets sick if we try to give her enough through the tube to support her growth. Aside from volume tolerance issues, she’s unable to absorb all the calories, nutrients, vitamins, and minerals she needs through her digestive system. Even when receiving more than enough calories via feeding tube, because of lack of absorption, she is malnourished and her cells are “starving”. The clearest and grossest example of her issues is that every type of solid she eats by mouth goes in and comes out in her diaper, not broken down at all. If she eats 4 bites of carrots, and you will see 4 bites of carrots in her diaper. Addie needs PN to grow, physically and cognitively. The biggest reason she needs parental nutrition is to live, it’s literally and figuratively her life line.
The reason for the Patriots' superiority is immediately evident. The reason for Boston Children's is as well. I won't spend any time bashing Hopkins. They're an incredible hospital, that does great things for their patients. We're lucky that we've been close enough to have Addie's care handled by their team. They've gotten us through countless surgeries, put her on a path of growth, and have been there many times when we've needed them.
But just as the Dolphins aren't the Patriots, Hopkins is not Boston.
Adeline struggles with chronic medical issues, multiple diagnosis’s, and happens to look “normal”. From the outside, she does not appear sick. Itcan be frustrating, unhelpful, and sometimes a struggle to get her medical or early intervention team to get the entire picture. I wanted to share a little bit of what we experience and then ways you can be supportive to a family/person who deals with an invisible disease or disability.
Someone you love dearly has an invisible illness, and it can be difficult to know how to support them. Their illness can be confusing, they do not look sick, they do not always have answers to their problems, seem to have endless appointments and procedures, and it can be hard to know how you can help. Some days they feel great and lead a "typical" life, their instagram is filled with smiling pictures and quotes about overcoming struggles so you may even think they are "cured." The funny thing is about invisible illness, is that most of these disease people will have to deal with for their lifetime. They learn how to manage the symptoms, they can have surgery to correct things, they have good days, but it may be something they may to contend with for a lifetime.
The problem with Addie’s BROVIAC is that it will flush, fluids can go through, but we get little-to-no blood return. Blood return is when you draw back on the line, and blood begins to flow back through the line and into the syringe. Blood return is important! If you’re not getting blood, the solution shouldn’t just be to get blood from somewhere else and move on! Blood return is an indicator of patency (“the quality or state of being open, unobstructed”) and proper function of the line. Patency has a direct impact on the flow of fluids through the line and plays a key role in preventing infection from bacteria that can linger behind clots or obstructions. Infections are a central line patient’s worst enemy.