Update on Cayden

 

 

I took this with my cell phone…sorry, not the best photo :(

 

We had hoped that only part of Cayden’s shunt would need to be replaced but unfortunately that was not the case.  Maybe I shouldn’t say UNfortunately because they replaced the entire shunt with a newer, completely different model.  They were also able to determine for sure that Cayden’s headaches were caused by his shunt and not the hydrocephalus that required the shunt.  Spinal fluid collects in the brain in ventricles.  Picture the ventricles as cups…Normally those cups stay completely full but don’t overflow.  In people with hydrocephalus the cups overflow constantly.  In people with shunts (that are working as they should) the cups should look just like a normal person’s.  Cayden’s old shunt was actually draining too much fluid…essentially emptying the cup completely and causing the walls of the cup to collapse and rub against each other.  They were able to actually see this in surgery.  Cayden’s new shunt should keep this from happening  because it has a valve to control the amount of drainage.  His body is having to relearn what “normal” spinal fluid pressure feels like.  Cayden can feel the fluid draining now in places he isn’t used to and it feels “wrong” to him.  Right now Cayden can feel a big difference in pressure when he is standing vs. sitting vs. lying down.  Eventually things will even out.

The doctors at Mayo called Cayden a “champion healer” and an “over achiever”.  He was walking short distances just 4 hours after surgery and eating and drinking soon after.  He was (and IS) in a lot of pain and ran a fever the whole time in the hospital but the doctors felt he would be more comfortable at home so they dismissed him from the hospital just 36 hours after surgery-days before we figured they would.  Rochester, MN is about 5 1/2 hours from Fargo and I am sure it was a long ride home for Cayden. 

Since getting home Cayden’s fever finally broke (Thank God!), his stamina is increasing a little each day and his pain has become a little more manageable.  He has 4 incisions and those areas hurt of course.  His shunt and the area around it are major areas of pain too.  The worst I think is his neck.  The doctors were able to feed most of the new tubing through the same tunnel-except in his neck.  They had to create a new pathway through his neck tissue for the tubing and it is swollen and bruised and probably the source of most of Cayden’s pain complaints now.

Cayden is out of school for at least a week (which hardly seems long enough to me) and out of PE class for 6 weeks but otherwise his activity is basically only limited by what he feels comfortable with.  He is frustrated by the pain and fatigue but he is doing so much better than expected.  He has handled this challenge with more strength, courage and faith than you could imagine.  I am so proud of him.

 

On a side note…

This was the view from Cayden’s hospital room.  The room looks out onto part of the Mayo campus.  Our experience at Mayo was 100% positive.  Everyone we came into contact with was friendly and professional.  The nurses went out of their way to not only take care of Cayden, but also me.  I felt completely comfortable there, knowing they were giving excellent care.  I would wholeheartedly recommend Mayo.