Anyone who knows Maddie knows that she makes a snoring sound when she breathes. But that gets MUCH worse when that poor little girl is sick. At the hospital, she'll get put on High Flow, and you can visibly see her relax, get comfortable, and feel better. The snoring sound returns to normal, her rate of breathing slows, and she no longer looks like she's gasping for breath. That pressurized air keeps her little airways open so she doesn't have to work so hard to breathe. This allows her body to work on fighting the infection that got her sick in the first place. High flow is pretty much the number one reason why we have Maddie admitted to the hospital- to decrease her work of breathing so she can recover from illness.
We are beyond excited because this week we got a High Flow machine set-up in our home! This is unheard of in the La Crosse area. A respiratory therapist from St. Paul came to our house, set it up, and trained our nurses. Madelyn's doctors from Gillette Specialty Hospital helped arrange it with the goal of decreasing our hospital time.
Will Maddie still get sick? Of course. She's immune deficient and medically complex- this won't change that. Will she still get hospitalized? Absolutely. She needs to be in the hospital when she's critical, and especially when the cause of her illness is unknown. IV antibiotics, readily available doctors, and life-saving measures happen in the hospital, not my living room. BUT, the High Flow system should get us out of the hospital sooner. So, if Madelyn is admitted to the hospital for pneumonia (which is frequently the case), she will get her chest X-ray, maybe do some IV antibiotics, and then once she's stable on High Flow, we will go home and the nurses will monitor her there using our machine. It takes Maddie a week or more to get over these illnesses, and spending that amount of time in the hospital is terrible. We miss so much work (everyone I work with is nodding along right now) and it's such a disruption for Ava too. We could stay in the hospital a day or two, and then bring our girl home to rest and recover with the support she needs.
I could not be more grateful for our supportive pediatrician and local clinic nurses who "get me" and trust our ability to care for Maddie at home. I also couldn't say enough positive things about our home nurses who truly keep our family going. Their drive to learn more in the interest of improving Maddie's quality of life is admirable. I truly wish that every medically complex child was afforded the relationships and support that Madelyn has.
