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.

Hurry up and wait

              

If any of you ever need to visit the Mayo Clinic (and I pray you don’t), I highly recommend it.  The facility is beautiful and the staff and physicians were so nice, helpful and professional.  It is a first class facility.  It is located in Rochester, MN.  It employs 31,000 people and covers 15 million square feet!!!

We were in Rochester for 3 days of testing and office visits.  Cayden was seen by a pediatric Neurologist and a pediatric Neurosurgeon.  The Neurosurgeon’s name is Dr. Wetjen and he decided that Cayden will need to have surgery.  Surgery is scheduled for 2 weeks from today, Oct. 27th.  Cayden’s shunt is intermittently failing; however, Dr. Wetjen thinks that the cause of the failures is the tubing, not the portion embedded in his skull.  The plan, the hope, is to replace all of the tubing but leave rest.  He may even be able to feed the new tubing through the original canal, alleviating the need to re-tunnel a new canal through the side of his neck, through the chest wall and into the abdomen.  However, a lot is unknown, and won’t be decided until he opens Cayden’s shunt tract.  Cayden’s shunt has lasted much longer than average and because it is 13 years old there is the possibility that the Doctor won’t be able to “meld” a new system with the older one.  In that case, the entire shunt will have to be replaced.  Newer shunts also have a siphon device on the end of the tubing in the abdomen.   Cayden’s does not.  Cayden’s is not draining spinal fluid off his brain and into his abdomen quite as well as it should.  As most of you know, Cayden’s growth rate this past year was phenomenal.  This growth, plus the absence of a siphon to assist drainage, seem to be the cause of the lackluster peformance of his shunt.  Cayden’s shunt is working strictly off of gravity right now so regardless of how much of the shunt needs to be replaced, a siphon will be added.

We feel blessed that we ended up at the Mayo Clinic and blessed with the Doctors caring for Cayden.  Cayden knows that God is in charge, always but he is still anxious of course.  For now, I am trying to keep him busy, keep his mind otherwise occupied, while we hurry up and wait for Oct. 27th.

By the way, for anyone who wondered, this is what the actual shunt looks like.  The ventricular catheter is the end actually fed through a burr hole into the brain.  The shunt valve is just under the scalp, at the top of the burr hole.  It is the only part you can see and feel on Cayden.

               

Maplewood State Park, Minnesota

 

Proof God Loves Us

Don’t you

 

just

 

LOVE

 

Fall?

 

Yep, I am quite sure that we need only to  look outside right now to know God loves us.  The weather is gorgeous, the leaves are changing and it is still warm enough and light enough for the boys to spend their evenings outside.   God has a sense of humor though…we have a frost/freeze warning tonight with a forecast low of 35.  However, the weatherman assures us that we still have plenty of sunny, 60 degree afternoons to come (and you know they are always right).

Steve and I took a day trip to a state park in Minnesota recently to photograph the fall foliage.  We had a nice quiet afternoon (the boys were with friends) and I took a ton of pictures.  98% of them were horrid but I think I have a few worth sharing…I will try to put some up here soon.