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April Update

  It's been awhile since I've posted.  Justin's situation is hard to write about, but I know there are people who want to know what's going on with Justin, my son.  In truth, he is getting sicker and weaker.  For awhile,he made great progress, talking, eating, and getting back into his power wheelchair.   Then he started getting weaker.  His left lung became covered with secretions, and he needed surgery to scrape things out. Then a CT scan revealed more new spine fractures (total of 7).  After that, he just hasn't been able to get over the hump.  This week, Justin decided to discontinue the weaning from the ventilator.  He is on full breath support and can no longer use the voice valve to talk without dangerous oxygen drops.  Pain medication has been significantly increased to help him deal with the pain. It's a tough thing for a 23-year-old to confront one's mortality.  We will continue this journey with Justin to the end to the best of our abilities.  We
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Treading Water

Not much has been happening around here for the last couple of weeks to blog about.  

We had a quiet New Year's.  Well, mostly quiet.


Julia and Allie got some cross country skiing in.



Justin had neuromuscular day at UW Hospital. Twice per year, he gets seen by just about every specialist that you can imagine.  The thing about Duchenne's  muscular dystrophy is that there are never huge changes---just small changes that add up to big ones over time.  At the hospital, they tweak his medications, update his bipap settings, prod, poke and measure.  

 

There are usually follow-up visits.  Justin's lungs are weakening, and they will have him stay overnight next week to get some more measurements.  He uses the bipap for night time breathing assistance.  Many of the young men with Justin's diagnosis use an oxygen sipping tube during the day.  They will be deciding whether he needs that at this point.  

Before he can stay overnight at the hospital, Justin needs another Covid test.   We will be doing that tomorrow. The sleep study will happen next week--before he moves back into the dorms on the weekend.   

Assuming that Justin is successfully launched at school and the caregivers are all showing up per the schedule, Julia and I will probably head somewhere in February.  I don't even want to start planning until we see where everything is later in the month. 

Comments

greg said…
Don't you mean shoveling snow instead of treading water?

My nephew is over there at the Vintage World Champion Snowmobile Derby. This morning, with no prior warning, I got to watch him crash on the Derby's Facebook feed. Yeah, I can think of better ways to start my day - - - (he's OK and back out on the track but with a wife and young daughter now, not to mention a farm to run, you'd think he might give these shenanigans up!)
January 9, 2021 at 9:51 AM
John said…
Glad that your nephew is going to be all right. That must have been scary to watch on Facebook.

Snowmobile racing is one of those adrenaline sports that is dangerous but apparently really fun. Crashing brings us all back down to earth. On a much different scale, I get that adrenaline rush when I'm thumbing down on my ATV throttle a bit heavier than I should on my long driveway. Speaking of which, my driveway is over 100 yards long so I don't shovel much snow. I have a plow on the atv for snow removal, and a heavy duty multi-stage snowblower for when the drifts get too high to plow. I take it nice and snow with the plow down on the asphalt. Our region of Wisconsin hasn't had much snow so far this winter, but it's a lot more of winter left. That derby is in Eagle River about three or four hours north of me.
January 9, 2021 at 10:15 AM
MFH said…
GOOD LORD!! LOOK AT THOSE CRAZED WOMEN!! There's no telling WHAT goes on there!!
January 11, 2021 at 10:43 PM
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