MARCH: In Like A Lion, Out like a Unicorn???

Thinking back on this month, I ask myself, "How did we get here?".  I looked through pictures trying to establish a timeline as to the events which took place this month and am disheartened by the transition my little boy has taken.

I knew I wanted to write tonight; to update everyone on Caden's progress or lack thereof, but I wasn't sure which approach to take. That was until his nurse today asked me what brought Caden to the hospital in the first place and I honestly couldn't remember.

I know that during the first week of March, Caden was having a significant increase in myoclonic jerks and his therapist at school thought he may have had a seizure.  Caden also had an increase in vomiting and we noticed he seemed to be more lethargic.

Caden had an outpatient appointment with his neurologist who suggested we admit Caden for a 24 hour EEG.  Yes, you read that right...a 24 hour EEG.  It made sense and we were concerned.  We were hoping to rule out the possibility of these jerks being seizures which fortunately they were not.

Caden when he was first admitted

During his EEG

                                                     
And then I don't know what happened???

Next thing I know he's being transferred from the neurology floor to his "usual" floor (Integrated Care) which manages the kids who are medically complex and have more doctors than stuffed animals.  From there, we went in to the typical "Let's try to figure this medical mystery kid out by poking and prodding him until we get answers" mode.  Now don't get me wrong, Matt and I want answers too, but somehow I feel we got lost in the shuffle.

Caden was brought into surgery on May 13th for an endoscopy, muscle biopsy, shunt tie off and Botox of his salivary glands.  The endoscopy came back "normal" for the most part, as did the muscle biopsy.  The Botox was simply done to reduce saliva production to curb some of Caden's gagging.  The shunt tie off was in hopes that some of his declining health issues were due to the shunt over draining. We were convinced that this was why Caden preferred to hang upside down and was catatonic when upright.  This had to be it being the top pediatric neurosurgeons in the country felt this was the case.

After his first surgery

Almost immediately following surgery, Caden began screaming in pain like I had never heard before.  When he wasn't screaming in pain, he was sleeping.  Something wasn't right and he was brought to Intensive Care. On Monday, March 17th, he was back in surgery to have the shunt externalized to check the pressure. Sure enough, his pressures were through the roof and he clearly needed the shunt.  From a diagnostic standpoint, this ruled out the shunt being the reason for Cadens positional preference, but it did not give us an answer. He also had a Broviac placed so he could begin TPN hoping to give him more calories to improve his overall growth. 

Waiting for surgery number two

Three days later, on March 20th, he was back in the operating room to have the shunt unclamped. After this surgery, Caden was showing some improvement but was still neurologically unstable and was no better off than when he first was admitted.  Medications were added or tweaked and he was sent back over to Integrated Care.  A few more studies and tests were done which all came back as "normal", "within normal limits" or "unremarkable". I took the courses to learn how to administer TPN at home and we were beginning the discharge process.

After surgery number three

That was until the morning before he was scheduled to be discharged. When I woke up I noticed an eraser size hole on Caden's chest where his neurosurgeon unclamped the distal end of the shunt.  Doctors looked at it and agreed there was cause for concern because the shunt drain was visible and there was a high risk for infection.  Instead of packing to go home, I was packing to go back to Intensive Care. That same day, Thursday, March 27th, Caden was again in surgery and his shunt was being externalized to ensure there was no infection.  

After surgery number four

Fortunately there was no infection, so today, March 31st, Caden was back in surgery to have the shunt re-internalized.  I hope you have been able to keep up because even as I write this I am asking his nurse for dates as to what happened when. Remember....in my very first post I told you it would be an adventure. Caden has not disappointed his followers.  I wish he had. 

I look at him now and I see a totally different child. At least physically. The little boy that came in on the 7th had a few scars from his past seven surgeries.  The boy I see today has eight new incisions from the five surgeries in nineteen days, one of which was opened four times. Although he is just as beautiful as always, his body has been battered and beaten this stay and I worry his determination has as well.

After surgery number five (notice the physical transition)

We hope this is all for now, but we know it is not.  We are pushing to have the Broviac removed before he goes home because we are concerned for infection due to his poor wound healing.  This will require another visit from anesthesiology but no surgery.  

His neurosurgeon is on board with our theory of cranial settling due to his connective tissue disorder.  He is concerned that it will be difficult to convince other doctors but he is willing to reach out to those who specialize in children with Ehlers-Danlos.  We will pursue his care elsewhere as we are beginning to feel we've exhausted all options here at CHOP.  The journey is far from over and the mystery of my little medical unicorn continues.

I am only hoping April brings him home safe, surrounded by his loving family and friends.  I pray he is stable and recovers with little pain and discomfort.  I wish to find that certain someone who will take a special interest in Caden and will hold our hands and guide us as we continue to search for answers. I ask that April finds peace for all the children who suffer and endure through more than anyone can imagine. They, too, have a journey.

Despite a very discouraging and difficult month there were some bright moments and I thought it would be nice to end the month on a positive note.  So here are the happy moments for March:

Caden got his own Facebook page (over 700 likes so far)
Click to LIKE Caden's page

We began a pay it forward fundraiser to help other families with medically ill children
Click to purchase TEAM CADEN apparel and support our cause

Caden's journey was embraced and shared by so many around the world
(over 28,000 page views)

Emily and Ethan even helped with the housework (they insisted)

We celebrated Cerebral Palsy Awareness Month

We were together as a family for an hour on Sunday, March 30th
(first time since March 6th)

Caden never stopped smiling