Ethan was discharged this afternoon and is doing terrific.  He was a little on the grumpy side from severe lack of sleep, so is resting quietly now.  If I had any sense, I would be too…

Anyway, the 6^th round has been terrific so far!  We checked in Monday morning and sure enough – the nurses had the helicopter suite (Room 550) waiting for him.  Ethan was thrilled to have the convenience of watching the helicopters from his window and they seemed to be coming (sadly) around the clock for the first few days.  This flurry of helicopter activity would eventually come back to bite us, but more on that later… 

During the infusions, Dr. Horn added Decadron (a steroid) into his Benadryl/Ativan IV drip and it seemed to make all of the difference in the world.  He was only sick once, as opposed to the dozens of times per day that we had been accustomed to.  Ethan was so incredibly active throughout his stay that Dr. Greenburg joked that someone needed to tell him that he is on high-dose chemotherapy… he certainly wasn’t behaving as such.  His energy and enthusiasm during treatment were a welcome sight for all of us.

He came with his regular “to do” list, which always starts with a call downstairs to his Radiation Oncology ladies to tell them that he’s arrived at the hospital.  Of course, they came to visit Monday night bearing their customary gifts.    We also woke up Tuesday morning to see a beautifully framed picture of Ethan with Fireman Kevin taken during his mid-December stay.  It was a really nice, unexpected gesture!  We thought Kevin would be back at medical school, but we were excited to hear he had one more week off and would be working while Ethan was in. 

By Tuesday afternoon, everything was going about as well as it possibly could.  Visits from the Radiation nurses, Fireman Kevin, no sickness and lots of helicopters!  Well, that’s roughly when things came un-done...  About 3:30 Tuesday afternoon, Ethan was sitting on his bed when we heard a helicopter approaching.  He enthusiastically jumped down from the bed and stepped on his IV.  He’s done this a few times before and has caused the IV to disconnect from his central line.  When the line is open and the IV stops pumping stuff in, other stuff (blood) starts spewing out.  Since it had happened a few times before, I didn’t panic too much and immediately reached for his central line to clamp it shut.  But there was no central line.  I thought I might faint. 

I hit the emergency button and applied pressure to his chest where the line had been.  To my surprise, there was still some line there, but I couldn’t quite see what had happened through all of the gauze, tape and blood.  Within seconds, about 10 nurses piled into the room to assist.  They were all amazingly professional and I’d call the next 10 minutes a methodical frenzy.  Someone also sent for Fireman Kevin to help calm Ethan.  Thankfully, he was not receiving chemotherapy at the time of the incident, or a HazMat Team would have also been added into the mix.  It sickens me to my core that a HazMat team would need to clean up this so-called “medicine” that we’re putting in his body to make him better...  I could go on about this for pages and pages, but I’m long-winded enough without dragging my emotions into it. 

Anyway, Ethan was hysterical.  It only took him moments to piece together what had happened and the implications.  He kept crying “I’m going to have to go back to the Operating Room, but where will they put my propofol?!?!?”.  I think all of the activity scared him a bit, but mostly the realization that he would have to endure a “pokie” somewhere down the road. 

An IV Team was paged right away and they came to his room to assess the situation.  It turned out that his central line had snapped right above the “Y” for the double lumen and there was enough line remaining that it looked like it could be repaired.  And so the process began…  His room was turned into a mini-OR with a large sterile field.  After 3 unsuccessful attempts and one do-over following Ethan’s potty break, a new “Mr. Blue and Mr. Yellow” were finally attached and glued into place ~ ending around 6:00 pm.  But since the glue was wet, the line couldn’t be tested for at least 4 hours.  The IV Team was not optimistic about their success, as the line was very difficult to re-attach and seemed to be leaking at the repair site.

Then even more bad news for Ethan:  Since he had been disconnected from his IV for over 3 hours, we needed to re-connect so that we could keep his body hydrated and keep the anti-medics flowing to control the vomiting.  He had to get that “pokie” he had feared.  He sobbed and sobbed when I told him, and then asked if Fireman Kevin could be the one to do it.  He really loves him, I think.  Fireman Kevin, of course, agreed – what a guy!  I think it was very difficult for him, though he may never fully fess up to it.  He did admit to being the first time he actually said a prayer before entering the room to start an IV…  Kevin got it in on his first try and was much more effective about concealing his anxiety then Ethan. 

At 11:00 that night, the IV Team returned to test the line.  As I said, they were not optimistic and the line had been without heprin for over 7 hours by then.  The Pediatric Oncologist  on call had also been down to discuss timing for the surgical placement of a 2^nd line when his counts recovered from this cycle…  I was bracing myself for the worst while I watched.  The line didn’t flush at first, but then something just gave way and it seemed to work like new.  Ethan was re-connected within 15 minutes and when everything was said and done, his treatment was only set back by 2 hours.  Ethan recovered right away.  As for me, I think my heart finally stopped racing sometime after midnight and I was able to eat again by the next day at lunch. 

I asked several people if this kind of thing happens often and the answers were all about the same...  Yes, it happens but not frequently.  A lot of people said that, frankly, most kids who are sick enough to need a central line don’t have Ethan’s level of energy and activity – and that if it were going to happen, it would happen to Ethan.  A few were surprised, given Ethan’s disposition, that the line has lasted this long.  We’re now 7-1/2 months and counting…

Anyway, we’re all fine now and are hoping that we actually have some dull moments in the near future to balance out our week.

Regards,

Kim.