Day 125: Central Line was Removed, Today was a Good Day!

After a very early start (5 a.m. to be exact), skipping breakfast and an anxious couple hours of waiting around, we are very happy to say that Idan’s central line is finally out!  Although he needed to be sedated for the procedure, they removed it in a matter of minutes.  The line has come to represent so many of the challenges Idan has been put through in the past year, so this was an emotional day for all of us.

When his line was place back in mid-October, it was the first real procedure that would mark the beginning of transplant, and we were set to be admitted the next day to start chemo. It was a very long day back then, as the surgery got pushed off from 10 a.m. to 3:30 p.m., and we all had to entertain a fasting and very cranky Idan for hours only to have him taken away to be intubated and have a scary foreign object placed in his chest. Idan woke up then very groggy, and his line did not stop bleeding for three days. The line came to represent all our fears and guilt about what Idan is going through and we could not wait for the day it would come out.

Over the next 4 1/2 months, however, the line would come very much in handy as they could take blood and give meds without poking or hurting Idan. Over 100 blood draws, 4 blood transfusions, 3 platelet transfusions,  several IVIG transfusions, 5 days of chemo, countless doses of antibiotics and other meds as well as immunosuppressants went in and out of that line. And, of course, two large bags of Idan’s donor’s bone marrow went in through that line. Idan got used to and even began enjoying the routine of waking up at 7 a.m. every morning and having us flush his line with saline syringes and heparin, and he quickly learned to sit very still for the 30 minutes during his complicated and tedious dressing change every week. He knew that he was not allowed to pull or touch the lines, and made sure to shake his head and say “No No No” every time he momentarily forgot and decided to yank on them anyway. The line became an extension of himself, and I am sure that in some way he will miss it. But we will not.  The line posed a constant risk of infection, was a nuisance come bath time and play time, and was an incessant reminder of all that Idan has bravely withstood with a smile on his face but that no little boy should ever have to.  Good riddance!!!!

When we left the hospital, the sun was shining bright in Seattle.  Back at home, Idan was able to play without us constantly bothering him to make sure dangling lines were tucked away.  Best of all, now that Idan’s line is out, we can start making plans for our return trip home to New York.  All in all, it was a great day.

As for Idan’s rash, we have been able to slowly start weaning the steroids while keeping the rash at bay.  We hope the trend continues because the steroids have made sleep all but impossible. Regardless, even if we only dream of uninterrupted sleep, we will all be sleeping “easier” knowing that we are rid of Idan’s central line.