I wrote recently that I have been surprised at how easily we fell into a manageable routine at home with June. People are often surprised, but glad, to hear this, but I sense that they are curious about what June’s care actually entails*. I also sense that others have a well-intended curiosity about our “rough” days: how often do they occur, what exactly is difficult, and how can friends and family best be supportive. I hope to shed some light on these topics by sharing a little about what a normal day is like for us. We do have our rough days occasionally, too, and I’ll share what that’s like in the next post.
I often say that caring for Juniper is not very different from caring for any other baby. This is one of those statements that people are usually curious about and a little suspicious of exaggeration. What I mean by it is that June’s an adorable baby who coos and kicks and chews her fingers and needs a diaper change occasionally. And she also has a tracheostomy and a heart arrhythmia. The heart condition doesn’t necessitate any extra care aside from daily medication, so it’s really just the trach that requires attention beyond normal infant care. The trach needs to be suctioned about as often as you and I semi-consciously clear our throats throughout the day; this takes about 15 seconds each time. Also, the area around the trach needs cleaned once a day, which takes about 10 minutes. She uses a medical grade humidifier at night. And the trach needs to be completely changed out once a month, which takes 5 minutes. And that’s all as far as *direct* care for June. It does take a ton of training to be ready to provide this care, since we need to know what to do in all unusual circumstances and emergencies. But the care itself on a normal day is easy.
There are three additional ways aside from direct care that our routine is different because of June’s medical needs: logistics, medication, and medical care.
Logistically speaking, June must always be monitored for signs of respiratory distress indicating a plugged trach, and a suction machine must always be nearby. The majority of the time, we simply monitor her visually, and we know she’s not in distress when her color and body language is normal. In fact, with regular suctioning, she hasn’t gotten to the point of emergency distress. If we can’t glance at her frequently, such as when we’re occupied, in another room, sleeping, or driving, we attach the pulse and oxygenation (pulse/ox) monitor to her foot which will alarm if there is a problem. If we’re leaving the house, we need four items total which fit neatly into our stroller: the portable pulse/ox, the suction machine, the emergency resuscitation bag (haven’t needed it so far), and diaper/meds bag. We also keep a portable oxygen tank in the car to use with the resuscitation bag, but we’ve never needed it either and we don’t lug it out of the car with us. It sounds like a lot at first, but in summary it is: look at her, suction periodically, and tote some gear around. It’s actually pretty easy, too.
Medication is admittedly not easy- it’s more like a logic problem. Right now she’s taking 8 medications: four are long term use, one is an extended short term, and three are short term (ending SOON, thank goodness). Six are oral liquids, one is cream, one is an injection. Three are refrigerated. Two need shaken. One goes with food. One we receive by refrigerated fed-ex every week. One needs to be ‘compounded’ at a specialty pharmacy. One previous med cost our insurance $1500 per dose and had to be triple verified before each shipment from a separate specialty pharmacy. And both June and I dislike them all. 😛 But really, this is 15 minutes a few times a day, then it’s over. And the med list will shrink steadily over time as it already has.
And lastly, medical care. We have at least one doctor appointment every week, mostly at the children’s hospital an hour away. Coordinating with doctors, insurance, billing, the durable medical equipment (DME) company and the three pharmacies takes up the most time. I am beyond grateful for my natural love of organization which helps me wade through this administrative stuff with relative ease. This hassle is successfully tamed by folders, speed dial, a spiral notebook, and my iPhone calendar so that it doesn’t eat up too much of my time and worry.
Usually our days are pretty easy going, even the frequent doctor appointments. Soon I’ll share what a day gone arwy looks like (which thankfully is rare).
*This is a great site for more trach info!