When Your Toddler Refuses His Meds

It has been about 10 months since we have received Rowland's Cystic Fibrosis diagnosis and truthfully it really hasn't felt like we've had a break from all of the doctors appointments, trial and error of medications, and more recently a hospitalization that I haven't shared the details about yet on social media. I feel like I am living two different lives. One life is filled with a lot of fear about the future-- will Rowland vomit again? Will he refuse his medications? Will he get sick and require a hospitalization? Yet, the other life is filled with fun activities-- going to music class and nature class and bible study with Rowland, being able to watch Rowland play on a play structure that overlooks the ocean, and feeling thankful for my open water swims and my favorite activity of all time, biking to Santa Monica. I have found a way to compartmentalize much of CF so I'm not just sad, resentful, and angry all of the time. I think about how people living with CF have a profound appreciation for life because they work hard to be able to live-- through doing their daily treatments and various medications that have become available and accessible due to the vast amount of funding and research that has gone into finding treatments that prolong CFers lives.

I feel so grateful that Rowland was born at a time where there are numerous medications available and accessible to our family that will increase Rowland's life expectancy and allow him to live a mostly normal life, but goodness what a burden these treatments can be-- they take time, and when you have a toddler it can be exhausting trying every trick in the book to get those medications in their little body.

In the morning when Rowland wakes up, we put him in a chair to do his treatments. We use something called a Vest Airway Clearance System that shakes his chest to break up any mucus that may be in his lungs for 20 minutes. While this is happening, we do nebulizer treatments- first albuterol, then hypertonic saline, followed by pulmicort. These three medications help keep his lungs clear but combined take about 40 minutes to complete. In between the hypertonic saline and pulmicort we give Rowland three additional medications through a syringe. First, he receives omeprazole which is a proton pump inhibitor which treats reflux (and one I resisted giving to him for a while until we had data that proves Rowland has reflux which he does), then erythromycin, which is used for delayed gastric emptying that Rowland was diagnosed with. Delayed gastric emptying means that his body takes longer to digest food, making Rowland feel full, and therefore not eating as much as he needs to to gain weight. In addition, the combination of reflux and delayed gastric emptying had been causing Rowland to vomit regularly in the evening. Reflux and delayed gastric emptying issues are because of CF. Finally we give him an appetite stimulant to help him eat more food in order to gain weight. Recently, Rowland has been refusing his medications from his syringe and it is absolutely exhausting. I end up sitting there for 20 minutes trying to distract Rowland with Youtube videos of "Songs for Littles" or "Encanto" until I catch his mouth open and I can shoot the medication into the side of his mouth. If I miss, I fear that Rowland will have a vomiting episode in the evening (something that hasn't happened for two weeks thankfully). This routine I just shared happens twice a day, once in the morning, and once in the evening before dinner. In addition, we have to give erythromycin 20 min before lunch and bedtime as well. 

I think that's where the realization kicks in. Rowland is my first child and I have no idea what life would be like without a child with CF. I often forget that most first time parents don't have these struggles. When I remember, it is a very lonely place to be in-- knowing that most people cannot relate to what I am experiencing and therefore I don't like talking about it. I don't think about it often, but sometimes I wonder what it would be like to just wake up and Rowland and I head off to an activity without any worry about treatments. What a life that would be and when I realize that probably won't ever happen, it feels like I've been kicked in the stomach. It makes me sad for Rowland. After the sadness though, I remember that Rowland won't know anything different and there are some benefits to treatments. Other than obviously keeping Rowland healthy, it is a carved out time he has for himself. He could eventually play video games, watch movies, meditate, or do something for himself during his treatments. I try to remember that there is a way to think of these treatments in a positive way.

Most people, including my closet friends, don't know what our routine looks like and I guess in my attempt to feel less alone, I choose to share what is required of us to keep Rowland healthy. I don't want pity. I suppose I just would like awareness of what those living with CF and their families (if CFers are little) go through. And it can be therapeutic to write. Oddly, when I write I find I give myself grace that I don't always give myself in those difficult moments. When I write, grace is replaced with a nagging feeling of mom shame that I experience.  Sometimes I feel shame for letting Rowland watch TV while doing treatments, sitting in a chair for too long, not getting a dose of medication into his mouth, or because he gets to bed too late because I was late in finishing up his treatments. When I write though, I can take a step back and remember that we are trying our best and our medication routine won't ever be perfect and that's okay. 


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