Our daughter with SMA, Ella, had a doctor’s appointment with her pulmonologist recently. Her grandparents took her to the appointment because my wife, Lindsay, and I were working. Ella and her grandparents started their day early and returned by mid-afternoon.
During the day, we received a call from the doctor, who wanted to let us know about Ella’s lung capacity, which was 50%. We were stunned. We had always thought that Ella, who is 10, had pretty good lung capacity, but we were wrong. We discussed ways to help Ella gain some of that capacity back.
Ella has a BiPAP machine in her room that she previously used every night, but for some reason, we had stopped using it. The doctor told us to start using it again, every night. Doing so might expand Ella’s lung capacity, she said. Ella also has a cough assist machine. We only used it when she had a cough and couldn’t get the irritant out. The doctor said to use it every day as well to help expand Ella’s lungs.
Sometimes we forget how fragile Ella really is. We are glad that she is home for her schooling, because we know that getting COVID-19 could be disastrous for her.
The doctor also said Ella had gained some weight since the last visit, which was good news. About a month ago, we restarted her overnight feed to try to put some more weight on her, and we are glad our plan is working.
Taking care of a child with SMA type 2 has been challenging for us as parents. We take care of her basic needs every day, and sometimes forget her other needs. Ella desperately wants to be like nondisabled kids, and we have to remind her that these aren’t the cards she’s been dealt in life. But we also have to remind ourselves of that fact.
Our plan moving forward is to continue with overnight feeding, reinstitute the BiPAP at night, and add the cough assist to the mix. We hope she will continue to gain weight and expand her lungs to more than 50% capacity. We must be firm, dedicated, and consistent.
Ella also will have to be on board. She’ll have to tolerate the BiPAP machine and be OK with a feed going into her G-tube throughout the night. She’ll also have to stop playing a little earlier to do the cough assist before bed.
We will do our very best for her.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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