brothers

brothers

Thursday, August 11, 2016

Let Ethan be Ethan

Ethan got his brace off today.  Boy was he ready for it!

We're still on our way home from the appointment. We stopped at a hotel in central Washington for the night to break up the drive and so Ethan could get some long overdue pool time.
Ethan's really happy to be out of the brace, but the recovery is going to be a long process.  His leg muscles are very weak.  He hasn't walked in six weeks.  And I would guess that his muscles have a different relationship to his hips than they've ever had before.

(Don't quote me on that part.  It's not something that we talked about with his doctor.  Ethan was so ready to be done today, this was one of the quickest doctor's appointments we have ever had.  We drove four hours up to Seattle for what turned out to be a 15 minute appointment.)

Anyway, Ethan can't walk unassisted, and it may be a week or two before he works up to that.  But, since the brace isn't holding him in place, he can sit up, which is huge.  And it's much, much easier to pick him up without the brace hardware getting in the way.

Ethan's doctor has said that we could take or leave physical therapy.  Right now, Ethan's legs are really weak,
As I write this, Ethan's doing
a little dancing with Sarah.
and may well limp for about a year.  But, looking at the bigger picture, Ethan's done more rehab therapy in the last 5 years than any three other kids combined.  This doesn't feel like an issue we want to push hard on. Ethan is a big muscle kid who is highly motivated to be active.  I think we'll add some PT time to his school plan and leave it at that.  

A couple of weeks ago, Ethan turned eight years old.   Since he was diagnosed at 51 weeks, Ethan's dealt with:
  • two bone marrow transplants
  • numerous small surgeries (hernia repairs, carpal tunnel repair, multiple sets of ear tubes, central line placements and a couple lung procedures)
  • developmental & verbal delay
  • Extensive rehab
  • anxiety and trauma related stress
  • major spine surgery
  • knee surgery and 
  • hip reconstruction
This fall, we'll be slowly working through Ethan's annual appointments.  At the moment, Ethan's in pretty good shape and we don't expect any particularly bad news.  We are all hoping that Ethan gets four or five good years before we have to deal with the next thing. (Whatever that will be.  If I had to guess, I'd say cornea transplants.)  Honestly, if we do find out there's something we need to address right away, I'm not sure if we could stand to put Ethan through it. 

We expect that we'll still have to come up to Seattle for surgery follow up and then regular ortho check-ups.  But hopefully, this will be the last big thing that we need to do here.   Sarah and I are very happy with the surgical and nursing team at Seattle Children's.  Dr. White's understanding of the complexity of the disease and his technical skill validated our decision to haul our butts up and back to Seattle a couple of times a year.  And the post-surgery doctors and nursing staff, really stepped up this time and really went above and beyond to tailor Ethan's care to his developmental level and trauma background. 

For other MPS families, we'll add that we're much less happy with the hospital management at SCH and how well the hospital as a whole understands the needs of MPS patients. As you may recall, SCH almost cancelled Ethan's surgery because they didn't have enough intensive care resources to care for him post surgery.  After we were discharged, Sarah and I wrote a long letter to the hospital management and CEO detailing how an arbitrary surgery delay would impact patients like Ethan and families like ours.   We recently heard back from one of their VPs and it sounds like they talked a lot about our concerns but then decided they were right all along and just wrote us off.   We'll give them one more go to see if we can get through to them before we throw in the towel.  But I think we're pretty glad that we don't need to decide whether or not to pursue other big procedures up here or go elsewhere.

But, that's not a big thing for us right now.  The major point for us is that we're done for awhile.  It's time to let Ethan be Ethan and time for smiling and laughter and more growth.