A Day in Junior's Life

I thought I would do a post that takes you through a day in Junior's life.  Of course our schedule can change according to Junior's health, appointments, weather, and other things.

This is what today looked like.
Junior woke up a little bit late after a late night.  Usually I would wake him up earlier but with the weather being off there is a seizure risk if I wake him up.  After giving him his meds, stopping his over night feed, giving him a little water, and taking off his bipap it was time for a treatment set.  First he picks either a tv program or music to listen to during treatments.  Today he wanted his music.
For those who aren't familiar with Junior's treatments I will go through his morning treatment routine.
Junior's medical cart with his main machines(those he needs throughout the day)

His treatment set starts off with a nebulizer treatment(pulmozyme is the medication he is getting). I forgot to take a pic of him getting his neb treatment this morning so this pic is from a few days ago. 

His IPV come next, from the look on his face I am sure you can tell it is not something he likes.  The IPV delivers pulses of air to loosen the mucous in his lungs.  This would generally be done with the mask over both the mouth and nose but Junior panics if it is over both.  We have found it works just fine when only on his mouth and he tolerates it so much better. 

 Then time for his airway vest.  The vest vibrates the chest wall to loosen mucous and help him move it to the upper airways so it can be cleared.  It is set so it starts at a low speed and then gradually
moves to a much  more rapid speed. 
 
Cough assist is next.  I give half of the cough assist treatment at this time(again not a favorite of his as you can see by his face).  I am holding the hose in the picture so you can see but when actually doing the treatment I would be holding the mask so it is sealed over his mouth. 

I then slide him to the opposite end of the bed and raise the foot of the bed.  This puts him in an "upside down" position.  He gets hand percussion on the lower lobes, even with all the other percussion we find he still needs this lower lobe percussion to stay clear.

Then he hangs out upside down for a little while so all that gunk we loosened can drain to the upper airways(that is a weighted blanket over his legs, it prevents any risk of him falling, of course I am right there but I still want to ensure there is no fall risk).  After this part he is moved back to the other end of the bed then the second half of his cough assist treatment is given.  At this point he can typically come off his oxygen if he is having a good day. 
 
Lastly is another nebulizer treatment(this time pulmicort), again I forgot to take a pic of him getting the neb today so this pic is from this weekend.

Next on Junior's schedule is his shower and morning care.
Goofy kid was pretending to sleep after his shower in hopes that I would let him watch a movie instead of exercising.

Exercise time is next.  During times when the weather is decent we head out for a bike ride and walk but that was not an option today.   We go through range of motion and a stretching routine and then he does some weight bearing and strength building exercises. I try to vary his exercise routine to keep it from getting boring.  During his stretching session I put on his different braces(hand splints, AFOs, back brace)


Up, up, and away, time for his stander and school work, giving me his "I am way too sleepy for school" look.

 School time as well as some craft fun while in his stander

 Into his chair for a quick break after all that hard work, he was working hard to look completely wiped out.

 Hmmm, he doesn't look so tired now that the tv is on for him.

A snack for the dude(when we are busy it is easier to give small boluses every 20 minutes then have him hooked up to the pump where the tubing may get caught and pulled out.  With his j tube he can only have 1 oz like this at a time)

He also gets his oxygen levels checked at least every hour if he is doing well enough not to be constantly on the monitor(this is his mini spot check machine).

After having his AFOs(ankle braces) taken off it is time for another set of treatments.  This time just one pic of treatment time. 

After treatment time Junior was ready for a nap.  He is still struggling with the weather and pollen so is more tired then usual(he doesn't typically take a nap and this time is just a little relaxing with a tv show or his solar system and music).  I would typically put him back in his AFOs before his nap but they are getting a bit tight(growth spurt) so today I put him in his night time AFOs instead.  We will be taking a trip to Shriners in the near future to get the braces adjusted. 

After his rest it will be time to get back on his feet, this time in his standing sling.  He will get to pick something to do and will also do some walking to get some exercise.  In the evening he gets to choose whatever he wants to do.  Sometimes that is a movie, painting, video games, ipad, computer, board game, toys, etc.  He is pretty wiped out tonight, and with all this wind I suspect he will sleep right up until treatment time(depending on the day he sometimes needs much more frequent treatments as well as treatments during the night, his average is 4 a day).  Then another gentle stretching and massage session before bed. 

There you have it, a day in Junior's life, we are so very blessed.