Bell Rung

Sharing our journey here is meant to be more than a place to vent. My intention is to open a window for those on the outside of this complicated life to gain some understanding while sharing circumstances which may help those facing similar decisions and situations. Therefore, I do plan on talking about Riley’s surgery. But for the moment, I may be a little on overload. We all know the expression “When it rains, it pours.”

This is where we are today.

The brace  we used after surgery for Riley has given him a very bad pressure wound.  Lots of dead tissue.  He is already very compromised along the spine and that area takes all his weight considering how we use the wheelchair and his daily activities.  He must now be off his spine as much as possible and I am learning to change dressings and give a sponge bath instead of his shower.  We visited the wound care specialist yesterday and cut out a lot of dead tissue.  This doctor does not want Riley returning to school for another two weeks. As you may know this is a huge loss; Riley has already missed one week and this is the class we had to fight for.

Wound Care Center

Wound Care Center

Due to surgery he should be readmitted to Physical Therapy for six months.  The only openings in the schedule are Tuesday and Thursday mornings up in Fort Myers.  That will add a lot to our week and the van.  Finally resolved the van stalling out while driving by our garage manager using what we called his “mechanics intuition. That’s a relief. Riding therapy may need to be delayed.  We all enjoy our weekly visits to the barn. He should travel as little as possible during this recovery because the chair is currently the worst place for him.  The last few days he has been very unhappy despite the Vicodin and Diazepam regimen.  He will return to the wound care clinic next Thursday. We have a plan of care and any wheelchair use will be at a very upright 10 degree angle, not very workable for travel or meal times.

Then we get to what’s up with Ronan.  We are keeping  him home from school today to help keep him calm and quiet.  Yesterday his school office called while I was an hour away dealing with Riley at wound care.  The office shared that Ronan was very upset by the noise in class. After Riley’s full morning, we gathered up Ronan to have him evaluated by our pediatrician – more travel/wheelchair time for suffering Riley.

Examining Ronan thoroughly Dr. A. announced “Your Bell Has Been Rung, young man!” This needed a little explanation for Ronan. For me, I was feeling a little wrung myself and have been imagining myself in a Looney Toons skit. Unfortunately, we discovered he has a concussion and demonstrated several Neurological issues during the exam such as clonus (an issue Riley shows frequently).  This stems from an incident during the Wednesday afternoon dismissal when another child knocked him over and he hit his head on the tile.  It was not on purpose… the boy had simply tripped on another’s backpack.  He had mentioned someone falling on him but he then went off to TKD for two hours as he appeared fine.  It wasn’t until late evening that he complained about noise bothering him. In the morning he appeared to be alright again, but once he was around a lot of commotion he again became distressed.

Ronan’s doctor recommends three weeks abstaining from any exertion, exercise, computer, homework, tv, etc.  He is very very upset by this as he enjoys participating in all the school activities.  He is also highly concerned how this will play out for the start of his fourth grade year.  His Principal called and had a long conversation to put us at ease over returning to school and having access to the office as needed during PE and recess.  Also, now the class is primarily engaged in evaluation activities determining how to proceed during the year.  Ronan has already demonstrated his competency through the FCAT testing. He will be evaluated again on Tuesday afternoon by the pediatrician.

So, we may be adding a little to the overwhelmed here.  Riley is crying again for the third straight day so I better get going.

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One Response to Bell Rung

  1. rita says:

    It is now people must know exactly what you need (I am pretty certain you are so overloaded you don’t know yourself) A family member wants to know what restaurant a gift certificate for a carryout would be appreciated. We need to all step in, right after we get off our knees.

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