Waiting for Independence Day

Drainage has been dragging and Miles had a bout of fevers and headache yesterday.  Today he had two interventions under sedation: 1) PICC line placed, and 2) chest tube replaced.

The PICC line is a larger, longer-lasting IV through which lots of fluid and medication may be delivered.  Plus, it accommodates blood draws, so Miles won't need to be stuck as much.  The new chest tube sits in a position that should better address fluid collections.  He is currently feeling good with a number of wry smiles.

He is getting more TPA instilled into his chest tonight, which is designed to break up any gunk sticking around in there.  This process is painless--he just needs to shift positions a bit.

He will be on IV nutrition with nothing by mouth for awhile--not sure exactly how long, or when he will get to go home.  We are not making estimates at this point.  When he does go home, it is likely this regimen will continue.  

Louis is carrying the torch back home.

Draining

The lymphatic drainage kept coming, so yesterday "just waiting it out" turned into plan B.  One way to slow lymphatic drainage is to limit food and fluid into the gastrointestinal tract.  This means nothing by mouth for a while.  Instead, Miles will get hydration and basic nutrients via IV.

Frustrating for sure.  You can imagine Miles was disappointed with the change in plans--more time here, limited food and drink, and more IV access.  Well, he's weathering it well today, and can even joke about the fine cuisine hitting his bloodstream.  A visit from brother Louis, who drove down four Ramsays and one Kell, certainly helped.

Action

Miles is downright jovial this morning.  Maybe it's because he shed his last IV, or maybe the senna is kicking in.  Either way, he's chatty and spright.  So, let's talk positives.

This morning he donned the right leg early, grabbed his teal-green Nike top, and killed a bowl of raisin-less raisin bran all before the residents stopped in.  He's pleased with the color of his chest drainage (something we all aspire to), and his surgeon says the lymphatic leak appears to be slowing.

We are off to a good start, so I let him play COD, as long he visualizes enemy soldiers as cancer cells.  His daily chest x-ray is coming up, and then a long jaunt is in order.  Later today, the surgical team will instill a third daily dose of TPA (a clot breaker-upper) into is chest cavity to loosen up pockets of remaining gunk and encourage optimal drainage.  If we are lucky, Monday could be the day home.

Yesterday, Miles' tenth floor corner room became boyville, with visits from Stewie, Aidan, Charlie, and Michael.  Good times.  The night before, Lizzie and Steph brought chicken tenders, and Sarah delivered saltwater taffy and gummy lobsters.  AJ and Stacey stopped in with cool soccer deco on Wednesday, and Grandpa Irwin met up with Uncle Dave at Miles' bedside.  Thanks to the Novaks for the retro football hand-held--Miles actually digs the red dashes.

See question below

Day Four with a Chest Tube

Surgical mission accomplished--mass out.  Miles says his pain control post-op was good.  His epidural was discontinued midday today.  So, all in all he has shed 4 lines since Monday.  One IV site remains, and so does the chest tube.

Here's the important update:

The usual chest drainage started to look funny.  Turns out there's a leak of lymphatic fluid into the thoracic cavity (chylothorax)--a possible surgical complication. Miles had a lot of scar tissue to get through as a result of his prior surgery, and during that dissection it's likely the tiny lymphatic vessels get disrupted.

So, there's no immediate threat.  And it's not causing pain.  The leak does need to cease though.  It is shown that 75% resolve themselves over two weeks. Thus, it's a bit of a waiting game, and it puts a damper on Miles' weekend plans. Instead of heading home by Friday, he'll be around till next week.

It is possible to go back in, find the leak, and repair it.  But who wants that? Not Miles, not his surgeon, and not his parents.  So we wait.  Miles is quietly disappointed, but moving on.  He's had some visitors, and more are on the way, which always kicks up his spirits.

Thanks for the Puritan chicken tenders Liz and Steph!

Ah, You Again

Miles had a clean three-month check up in March, including a clear chest CT.  He has been feeling great, doing his doings: baseball, school, trampolines, buds. 

Two weeks ago, a new lung mass showed up on CT: right side, back middle, and not-so-small.  Bone scan and labs were normal.

So what does this mean?
We met with the medical team, who have reassembled in Miles' regard and reached out to local and world-wide experts in management of recurrent osteosarcoma.  Here's something: there are two established chemotherapy regimens for osteosarcoma--the first was ineffective, and the second got us here.  So Miles might be headed into clinical trials. Meanwhile, we turn our focus to surgery: the new growth must come out.

Dr. Weldon, thoracic surgeon who removed eight little tumors from Miles' lungs last year, sized up the new situation, and we scheduled surgery for Monday, June 20. The expectation was that most of the mass could be removed.  In the process, the right lower lobe might go, and possibly the entire right lung. Additionally, the tumor abutted the central chest cavity, and Dr. Weldon made it clear there may be cells left behind.

Well, surgery was yesterday.  Five-plus hours.  And the day's news is good: the tumor was fully-contained within the tissue of the right lower lobe of Miles' lung.  As such, the lobe was removed, and Dr. Weldon did not identify any other sites of concern.

Miles is recovering from surgery in the ICU at Children's Hospital today, and expects to be back to the surgical floor later today.  He is perky between rests, hungry, and without significant pain.  He is anxious to get rid of the central venous catheter sticking out of his right neck.  His chest tube is draining the right stuff, and the other lines work silently beneath warm blankets.

See question below about this radiograph