“High Maintenance”
That Charlotte, she is a tough poke! Our Lottie has been hard to draw blood from since literally day one. In the NICU, her poor feet were riddled with crosses from multiple heel-sticks for PKU tests, most of which failed due to clotting. In the ICU, the top IV specialists would repeatedly max out on their limited attempts to change Lottie’s PICC line, trying from her neck to her ankles. In various labs, in fact every single lab we have gone to, each well intentioned phlebotomist would assure us of their abilities, only to dig around the crooks of her chubby little elbows and eventually give up, passing us along to the next person, who again assured us they could get our sample, but no.
It’s been a long road! Our current lab orders are for TSH levels through endocrinology. Every three to four months we need just one milliliter of blood to see if our dosage of Levothyroxine is still effective. Though I still can’t even pronounce Levothyroxine correctly, by now I do know the exact vein on the exact ankle that is our single/best shot for Lottie. (Saphenous, left) I also know with certainty, that this vein is only successfully navigated via ultrasound guided IV. However, every time I took Lottie in and shared this information, I was largely dismissed.
The typical process for getting a blood draw just does not work for our sweet girl. While I know what does work, as I mentioned, this process is not offered to an outpatient. Did it feel extremely high maintenance to say, ‘Sorry, your protocol doesn’t work for us.’ ? Yes. Would it be fair to Lottie to settle for a system not working for her? Of course not. So there is the crux.
There was a beautiful transfer in my role, through the sorting of this issue. Before I was learning Lottie’s various needs. Pure student and observer. In this situation, my intel is vital, and I am now learning how to orchestrate that those needs are met. A delightful pairing of assertiveness and the phrase “I know my child.” seems to do the trick.
Lottie’s “special needs” brake standard protocol and seem to be fairly inconvenient for the parties involved. For me, it just meant many hours, of multiple days, on the phone with hospital staff, getting largely tossed around, and still trying when told no. Finally someone was willing and able to help carve out a new path for Lottie that would fit her.
Taking inventory of a child’s needs and guiding them towards wellness is a basic part of parenting. Navigating all the ins and outs of medical advocacy is an expansion pack! Sometimes, it gets complicated. For me and my fellow go-with-the-flow people out there, it can feel uncomfortable to buck the system. There is often a stepping out into discomfort, in order to stand up for your child’s needs. However, for now, I am Lottie’s voice; and that means making myself heard. It rests upon Cody and I to continually ensure that the systems around our children are functioning and suitable.
Needless to say, today’s successful blood draw was no accident. There has been communication and coordination between multiple teams, machines, and each of their schedules in advance. An amazing lead has helped us form a new and consistent, written down plan for getting Lottie’s labs, and it is so much better. I am very grateful!
Lottie is still a tough poke, but our process has been fine tuned, so as to make it no more difficult than it need be for Charlotte. Recently, I have learned to establish myself, no longer folding to other’s assumptions over the best course of action concerning Lottie’s care. So many good steps forward!
In case you needed a reminder; you also get a seat at the table concerning your child’s care plan. Your voice and knowledge of your child is needed. You can also give yourself some grace, because advocating in the medical realm is no walk in the park! Time and experience will make today’s challenges much less daunting tomorrow. Promise.
You and I, we know we aren’t high maintenance, but when it comes to our kids well, whatever it takes to get the job done.
