The next day we came home.
It wasn’t exactly the happy ending that we had hoped for though because we were now burdened with caring for a PICC line leading straight to my little one’s heart. You can imagine how flustered and petrified this Mama was about the gross responsibility contained in that.
The hospital did not simply send us on our way after inserting the line, but did connect us to out-patient services who gave us a crash course in cleaning and administering the medication through the PICC.
I had been terribly strong, solid, stoic even throughout the whole messy, terrifying ordeal that had unfolded over the course of the previous 3 days, but knowing that I was responsible for, that’s right- me, managing my son’s home care was simply too much to bare. I cracked. I got downright belligerent with the woman whom was crash-coursing me (poorly I might add, this woman was no teacher) in caring for a line leading directly to my son’s heart!
I am a teacher! I’m not a f$#@ing nurse! You expect me to do what? How can you expect me to be able to handle this responsibility? What if I mess up? What if I forget to clean the line before administering the medication? What if it gets pulled out? What if I just can’t do this? Then what? Aaaaaaaaahhhhhhhhhhhhhhhhh!!!!!!!!!
That was the gist of my tearful, angry, no livid rambling. I may have thrown a few expletives in there for good measure.
I had totally lost my cool. I completely unraveled. I guess it had to happen sooner or later. The facade couldn’t hold up forever. This was simply too much for me to take on. There was too much room for human-error and in this case, human-error was unacceptable. The stakes were too high. I couldn’t do this. I was completely worked up and for the first time in our marriage, I’d say that my husband was as cool as a cucumber. Thankfully.
So, my mother and husband volunteered to take on the responsibility whilst I lost my sense of being. After critiquing the woman’s teaching style, she took 3 steps back and began again. So, they were trained.
I looked on.
Jonas was to be administered the antibiotic through the PICC line once daily. And in an effort to not give my child heparin that he did not need, since it has been reported to have disastrous results in children, we were to flush the line each morning with a saline solution so that there would be no clotting, which would be a very bad thing.
A visiting nurse would assist us for the first few days and then would come once weekly to draw blood and change the dressing. The first day that Joyce came out to see us, she could not flush the line. I scooped up my baby and rushed to the hospital. There the IV team came and without issue flushed the line. Human-error caused the line to not flush at home. Human-error…from the nurse. The wonderful gals on the IV team gave us extra caps that were made specifically for my little one’s top of the line PICC. No heparin necessary with this cap.
The next day, Joyce came out again and was able to flush the line and aided my mom and I in administering the medication. Though my mom was steering at that point, within a day, I took the bull by its horns. This was my baby. I could do this.
Each day, we would set Jonas up in the jogging stroller in the living room and would select Yo Gabba Gabba from the On-Demand listings. We watched Yo Gabba Gabba’s Teeth episode every day over the course of the next few weeks. We became quite good at the process.
Set up the tray with 2 syringes of saline, alcohol prep wipes, the antibiotic syringe, 4×4 gauze, and self-adhesive bandaging. Expose the end of the PICC line, clean with alcohol wipe, prep saline, screw on saline and flush, prep antibiotic, connect sterile tubing, place into automatic drip machine, clean end of PICC, connect tubing to PICC, push start. Then, after 20 minutes, disconnect tubing, clean end of PICC, flush with saline, cover with 4×4 gauze and wrap.
I got to the point where I could do it in my sleep, though I never got that comfortable. No human-error allowed.
The only hiccups came each week when the nurse would come to change the dressing and draw blood. I would listen to my little one scream, as I held him down so that she could lift the sticky adhesive without moving the line, attach a new locking butterfly clip after she cleaned the area with an iodine cleanser and then place a new sterile field. It sounds easy.
Jonas would scream and scream and wiggle. My mom and I would hold him down so that he would not move, because one false move could pull the PICC. It was a horror show.
On 2 more occasions, I ended up in the ER, once to change the dressing properly since he had become so sweaty from screaming during a typical New England August, that the sterile field would not stick to his skin, and to be honest, I didn’t feel comfortable simply taping it down. The second time we went in because during the dressing change struggle, the nurse had pulled the PICC out about 10 cm from his arm, and though it quickly and easily slipped back into place, I was concerned that it would need to be replaced and that it had moved. An x-ray revealed that we were in the clear. On each occasion the amazing IV team would assist us.
After 3 weeks of stifling worry, complete horror, angst, and panic that we had a quite incompetent nurse on our hands, our ordeal came to an end.
The infectious disease specialist was pleased with how Jonas had responded to the antibiotic. His labs were looking up as his body continued to create antibodies to fight the spirochete. It would still take months for my baby’s facial paralysis to go away, but at that time, all I cared about was taking out that darned PICC. It had become the bane of my existence. Autism was nothing compared to fearing for your child’s health day in and day out.
The removal of the PICC took less than a minute. We wrapped his arm tightly until it scabbed and healed weeks later.
Now, I am constantly reminded of the dangers that lurk in our yard when the temperature creeps above freezing. Jonas’ arm has a perfectly round scar where the PICC was once inserted. He notices it at each bathtime, and as I dress and undress him in the morning and night. He runs his fingers over it as if touching a memory. And though he shows no apparent emotion as he does this, I am certain that the memory of that time is vividly recalled to his mind.
And so ends this cautionary tale.
Editor’s Note: Please learn more about lyme disease, its signs and symptoms, no matter where you live, but especially if you reside in the Northeastern or Pacific Northwestern regions of the United States. Check your children daily for ticks. It could mean everything.