Waiting for a heart transplant: Ella's story

Nathan Knause

_____________

Reporter

  Let me tell you about an amazing individual. Her name is Ella Tagmyer. She’s nine years old, weighs 30 lbs, and has had eight open-heart surgeries since she was born. She is currently waiting for a heart in Children's Hospital. She has not left the hospital since July 2017 and is restricted to four floors with an IV pole hooked to numerous medicines that have to follow her wherever she goes.

  Ella is very high on the transplant list. She has been gaining more and more IV tubes. She was recently put into ICU and had to receive a chest tube because her lungs were retaining fluid. Ella has had to deal with plasmapheresis to relieve her system of antibodies, so if a heart were able to come in she would be able to accept it. Now Ella isn’t strong enough to handle the radiation and needs to be put on a new medication to help with her antibodies. It is vital that Ella stays on the transplant list because there are many factors that could take her off the transplant list, and if the rare perfect heart came for her she wouldn’t be able to accept it. The procedure itself is going to be very hard because Ella herself is so small and she needs a heart that will be small enough for her. At this point Ella has so many tubes that nurses have to help her even if she wants to stand. Ella’s first room at Children’s had air conditioning problems and was leaking water. Ella’s mom and some nurses had to move Ella and her numerous things to another room in the middle of the night. When Ella was put into ICU she lost her second room, and some of her items had to be taken home and put into her basement. Ella has gotten so much stuff at Children's it didn’t even fit in her room. When she got out of ICU and put into a new room, some of her items were brought back. There are other days were Ella is just tired. For a certain 72 hours in ICU Ella was lucky if she slept six. Overall even before she needed a transplant with all of her surgeries Ella has had to work to keep up in school and deal with being smaller and more fragile. Despite all of this Ella overcomes it all and is one of the happiest people I know.

   Every single thing that Ella does is possible by donations. Every event, therapy, or thing supplied by children comes from donations. Though most of this is already at Children's donations are something they will always need to keep it there for children like Ella and ones who come after her. Imagine a child stuck in a hospital for months on end in an uncomfortable bed in a undecorated room with nothing to do but focusing on their illness. Ella can still live her life and make the most of her time waiting for her “happy heart”.

   Besides being checked on by nurses throughout the day, Ella is constantly finding ways to pass time with the help of Children’s vast resources that are all available through donations. Ella has multiple playrooms available to her to spend the day in and pass time. Both her old teacher from last year, and her new teacher this year come in voluntarily to teach her and keep her updated with school. Though they may be thought of as simple playrooms Children's puts a tremendous amount of thought and technique into them with specific toys they get. For instance, they put certain types of fish tanks in for autistic kids to just look at because it has a calming effect. They want every kid to feel at home, so they get a variety of toys to cover all interests such as superheroes,  princesses, or cars. Finally, they have to make sure the toys have no sharp edges and won’t interfere with any IVs or medicines.

   Despite being stuck in one place Ella still has many opportunities that can come to her. She has met many Pittsburgh sports players, and painted a tile that will be permanently set in stone in the new Randyland sidewalk on the Mexican war streets in the Northside. Ella also has music therapy when she is getting injected with her medicine or another IV to help her through the pain. Many authors donate to the hospital and will bring an entire signed collection of books to give to the kids. They will also do book readings where all the kids meet in a lobby area with their book while the author reads it to them. The kids get to keep every book they get. Finally, Ella’s favorite, is art therapy where people bring art to Ella and bring her something specific or special to paint with all the supplies she will need. Sometimes they will use medicine syringes, to make kids less afraid of them, and squirt paint out of them to make splash art. Ella also gets to keep every piece of art she makes.

   The hospital not only helps the patient, but family members as well. The Ronald McDonald house is a place for parents to stay who don’t live near the hospital. A lot of families don’t have a Children's Hospital anywhere near them or are visiting and can’t be risked to move. Because of donations, parents are able to stay in these rooms for free and only have to worry about their kid's health. Also when having an abundance of IVs or kids that are very feeble, Children's provides wagons to them to help with moving around the hospital. For infants or babies, they will provide strollers.

  The most important thing that Children's provides is a positive and exciting atmosphere. Ella loves her nurses and each one has a personality that lightens Ella’s day. The nurses also have a great relationship with Ella's mom and look to her for help when they need Ella to do something. Ella's mom, Dana stated, “I think it’s good for them to have relationships to do things they need to get done,”  Ella has developed relationships with other patients as well as with the nurses. These relationships she has developed are some of the only kid interactions she gets. Ella meets many patients who she plays in the playrooms with. Her mom stated that when they were in Children’s more briefly for open heart surgeries they didn't really meet anybody.

  “Now that we have been here 24/7 for months we have met lots more people,” she stated

   When Ella gets what she refers to as her “happy heart”  her plans are to get a quad, have a party where she will wear high heels and serve chicken dip and salsa, play hockey like her brother, and is most excited about going up steps.


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