brothers

brothers

Wednesday, July 20, 2016

Halfway

Happy halfway day, everyone!

This is midpoint between Ethan's surgery (6/28) and seeing the doctor to get his brace off on (8/11).  In the meantime, Ethan can't walk or bear any weight for this six week recovery period.

Ethan's doing quite well, physically and emotionally.  His incision sites are healing really well.  We had one visit to the pediatric ER to assess some scrotal swelling when Ethan stopped peeing.  All of the fluid he received during the surgery and hospital stay was pooling in his groin because he was sitting around a lot.  (I'll spare you the pictures.)  Suffice it to say that it was definitely startling enough that we wanted to get an expert opinion about it.  The ER doc checked it out and iced it and confirmed that Ethan was able to urinate and sent us on our way.

Lighting fireworks and then scrambling out of the way!
Cruisin' around the hospital.
The next week, Ethan developed an early pressure sore.  It was a pressure point from laying around a lot, together with some extra friction at a point where two of his brace pads came together.   After a visit to the wound care clinic, and some suggestions for dressings to use, it's healing quite well.

Emotionally, Ethan's doing very well.  He came through the post-surgery in-patient stay much better that we expected.  This was helped quite a bit by the planning and hard work of the Seattle Children's team.  For this surgery, they really worked to understand how to support Ethan's developmental abilities and anxiety.  After a really rough post-surgery period there a couple of years ago, Sarah and I were really happy and thankful for all of their good work.


Ethan did have a strong combination of pain meds and anti-anxiety meds while he was in-patient.  The combination kept him pretty sleepy and groggy.  They gave his body time to start healing and gave his mind some time to come to terms with the trauma of the surgery and the physical barrier of the brace and not-being allowed to walk.


Ethan recently celebrated his 8th birthday!!
While he was in the hospital, Sarah and I were really worried that Ethan was going to undo the straps on his brace, take it off and try to walk.  Fortunately, the ingenious folks at the Seattle Children's orthotics department came up with a solution and zip tied the straps, so you can't take the brace off without scissors.  That bought us some time.  And over the last few weeks, Ethan's acclimated pretty well. Occasionally, it's a bit touch and go, and Ethan would still try to get up and walk if he thought he could get away with it.  But mostly, if we don't have to mess with him too much through sponge baths or dressing changes, he tolerates the brace well enough.
Outdoor science experiments with Tina!

All of us are counting down the days until his brace comes off.   Ethan spends most of his time in a reclining wheelchair, with occasional periods on the sofa or in our 6' beanbag chair.  For Tina (his caregiver), Sarah and I, this is a pretty physically demanding recovery.  We do a lot of two person lifts getting Ethan in and out of his chair, into the van, changing diapers or going potty. And Sarah and I are taking turns co-sleeping with Ethan to make sure he doesn't get out of bed in the middle of the night and try to walk around and find us.   Needless to say, we'll all be thrilled when he can start walking again, though the doctor says he'll probably limp for about a year as he heals and gets stronger.

Overall, we're enjoying summer one day at a time and counting down the days.

Ethan's countdown chain.
Each link represents one day in the brace.
This was about T-39 or so.

1 comment:

triloci said...

Here's to Ethan! He'll be running before you know it.

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