Our Children's Hospital Care Team
Updated: May 4, 2022
Children's Hospital is not a place a parent dreams of visiting, let alone at least four times per year. As you walk in those main doors, you are overwhelmed by so much heartache yet so much hope. It is a strange feeling to describe fully, but as Marlee continues to grow and our visits to Children's Hospital become the norm, the more this place becomes a part of our village and our hope.
When Marlee was born, and for the first year of her life, we made monthly visits to Children's Hospital. These days, we visit our Care Team at Children's every three months. The days start early in the morning as we complete her treatments before traveling to Denver. We make the two-hour drive to Children's and hope for easy weather and traffic as those two items can easily make the day that much longer.
Upon arrival at Children's, we first visit the Lab to have Marlee's blood drawn. She is a trooper and has a positive attitude but quickly remembers that she hates this part. Blood draws are done each visit to ensure the different medications she is on are not causing any adverse side effects. The blood draw is done through venipuncture, and unfortunately, we have only had one draw where the vein was hit on the first try. After completing her blood draw, we are immediately placed in a room, as CF patients are at such high risk. We do not leave the room throughout our visit, and Marlee's care team comes to us, one by one.
Our first visitor is the nurse who completes her vitals, including a height and weight check, which is already a least favorite in Marlee's book of fun. Once her vitals are complete, we wait for the next visitor. Next, we typically see our Respiratory Therapist, Ashley. Her priorities are to discuss Marlee's breathing treatments, her vest, nebulizers, and all things lungs and breathing. During this time, Marlee has to complete a throat culture test, which involves swabbing the back of her throat with a long Q-tip. This test is conducted to check for any bacteria growing in the back of her throat. I hate this part as much as Marlee does, as I want to gag for her! Thankfully Ashley waits until the end to do this as it gives us time to calm Marlee back down before seeing the next visitor.
Next in comes our Nutritionist, Megan. During our time with her, we discuss Marlee's weight, what she eats, or what she doesn't eat! She makes sure her enzyme dosage is accurate according to her weight and growth. We talk about the special vitamin that she takes, and she makes sure that the blood work aligns with the vitamin nutrients to ensure Marlee is absorbing the vitamin. When we first started the vitamin, we struggled as Marlee would not take it, and her blood work reflected her avoidance. We got things figured out and are super excited as Marlee is close to being able to take a chewable vitamin.
Once we say goodbye to Megan, we see our Social Worker, Alisa. Her main focus is to make sure that health insurance is not too overwhelming and ensure all of Marlee's care is handled. In addition, she helps us navigate the non-medical day-to-day realities that come with CF. From preschool enrollment questions to resources for siblings and the family, plus any programs available to us.
After our time with Alisa, we may talk with a Psychiatrist. Their goals are to assist us with Marlee's eating habits and her social behavior. We have learned that her social behavior plays a significant role in her eating behavior, which makes the assistance from the psychiatrist very beneficial as CF kids need to make sure they get their calories in. On occasion, we will also meet with a Physical Therapist to ensure her motor skills are on track! Thankfully this has never been an issue for Marlee as she is very active and does very well with her fine movements.
As we come in for the final stretch, we next meet with Nurse Katy, who has been with us from the beginning, and we are so grateful for her. We go over any questions that we may have for the Doctor. We revisit any current and past illnesses, plus any additional medications taken (antibiotics, steroids, etc.) and their effect on Marlee.
After we spend some time with Katy, we then visit with Dr. Martiniano, or Dr. M as we call her. Before we see her, she will review notes from our visits throughout the day so she is prepared to make the most of our time together. We review Marlee's current percentile for her height and weight, plus discuss her current treatment regimen. If necessary, this would be when we add treatments or make changes to any existing treatments based on how Marlee is doing. We also have plenty of time to discuss our concerns and fears and listen to her guidance. Dr. M holds an extraordinary place in our family. We have all got to meet Dr. M. The love and appreciation for Dr. M was apparent when my nieces first met her. It was not just a simple hello; it was a series of genuine bear hugs as they know Dr. M does everything in her power to keep their cousin healthy and strong.
Our next appointment for Marlee will be this summer. This appointment will be a bigger one as she will have a CT Scan of her lungs plus a bronchoscopy, which includes taking a sample from her lungs and checking for bacteria growth. We are already a nervous wreck!
After our day with our care team, we begin our two-hour drive home. It is about an 8-hour day from the time we leave to the time we arrive back home. It makes for a very long day, but a day we are so grateful for. Our care team is amazing, and we trust them so very much to care for our sweet Marlee.
Learn More about the Mike McMorris Cystic Fibrosis Research and Care Center and Children's Hospital Colorado.
We were torn on rather or not to share this video. As parents, it is devastating to watch your child hurt, let alone share it for others to see. But this is Marlee’s reality. She is resilient, strong, and a fighter, but not every task for her is done with ease. She hurts, she gets frustrated, but even at her young age, she knows it must be done. As her parents, her protectors, and her CF caregivers, we also face these moments. Never do they get easier, but they become slightly less daunting. We continue to learn how to prepare her, console her, and get ourselves through. We must take this journey day by day and face it with as much grace as possible, but trust me, it is not always graceful. To best educate and continue to raise awareness around all things CF, we feel it is important to show all aspects of our world.