These last two weeks have seemed a little like a single long day that wouldn’t quit! As parents of a child with cancer, we have been carefully prepared to be ready at a moments’ notice to pack and run…and pack and run again, but this has been extraordinary even for us. When I think through “moment by moment“, I never expect each new moment to be totally different from the last, but that’s exactly what this two-week day seemed to hold.
It all started as we commuted to the hospital for five straight days of all-day chemo infusions [insert comments and mutterings about traffic here] . We were mercifully able to be home on Saturday, but on Sunday, our best layed plans for “normal” and “rest” were blown to smithereens as soon as I heard the words “Come quick! Chase is bleeding!” and realized that one lumen on his central line had torn. …so, back to the hospital we went.
A lumen repair kit…aka: needle salvation
Sidenote: we often tell hospital staff “It’s Chase.”…as in “Yes, we know this rarely ever happens, but….it’s Chase.”
Back to the story… in true “It’s Chase” form, Chase’s line tear was in an area for which they had no repair parts, so after hours in the ER and the vascular access team weaving what can only be described as a sterile burrito (comprised of alcohol wipes, gauze and tegaderms) around the line -to protect from the errant bacteria-, we were discharged. Until Tuesday. When we went back in for blood and platelet transfusions and the line repair. We left that same night and managed to stay out until…Wednesday night. A whole 24 hours. At which point, Chase hit his chemo nadir (when the chemo is at it’s strongest point), spiked a fever, and after sitting in the ER until 2:30AM, were re-admitted to the hospital.
We were hoping to go home fever-free sometime on Thursday when the newly repaired central line malfunctioned (see: more blood everywhere) and so we didn’t leave until Friday night. I should also note that we’ve become very close with the vascular access team. On Friday night, the stability of the line was still somewhat in question, but with nobody finding anything decisively wrong, Thursday’s blood experience was chalked up to a freakish incident of nature and we were discharged with the niggling thought that the line would only ever show it’s cards once we left the hospital…and got home…and tried to rest. …which did indeed turn out to be the case.
The malfunctioning repair
On Saturday night, about an hour into Chase’s infusion, I realized his IV fluids were running down the front of his shirt, so after a brief moment of parental freak-out, I calmly put my eyeballs back into their sockets and we went back to the hospital. Triage in the emergency room lasted so long that by the time the doctors came to look at the line, they declared everything dry and in need of testing. After an hour or more of testing, it turned out that the line was leaking, so around our favorite admitting hour (2:30am, for those of you just joining us), we were again given a room with the promise of surgery consults in the morning.
Without a doubt, the worst part of the loss of a central line is the need for peripheral IVs (the kind they stick in your hand or arm). For Chase, that usually means three to five people holding him down and the collapse of at least one vein from his terrifying struggle to escape the needle. If you were questioning why we’d put up with a central line and all it’s drama in the first place, don’t miss this… The reason we put up with and even love the central line is because it saves Chase from needles. Medical staff can draw blood and administer any medication or chemo through this line – without ever touching his body.
Proudly displaying his IV – “You should see the other guys!”
It took four people and two tries, but they finally got an IV in Chase’s hand. And that concludes the events that led to Chase going into surgery on Sunday afternoon and getting a new central line.
Which summarily ended our two-week long day.
You can’t make this stuff up.
Moment by ever-changing moment.
The heart of man plans his ways, but the Lord establishes his steps. Proverbs 16:9
Sleeping peacefully in pre-op moments before he was taken back to the OR