ONE DAY AT A TIME

I have always been a dreamer.  I had my entire life mapped out. Everything had a plan.  And then Caden came along.  When the triplets were little I kept a calendar of every doctors appointment, therapy session and event.  I made lists and used more post-it notes in one day than most people use in a month.  Then I realized that my plans were always being scratched off, changed or erased from my calendar.  My to do lists were never done.  It was then that I realized life was messy, unorganized and things don't always work out as planned.

Caden made sure of that.  His many illnesses, medical complications and hospitalizations made it impossible for me to plan anything.  For the first time in my life I had to take it one day at a time.  And this is now how I live. People will call me and ask what I'm doing a month from now and I find that question so very overwhelming. A month from now?  I don't even know where I will be tomorrow, let alone a month from now.

Tonight, I was supposed to be at a wedding, but instead I am writing this from the pediatric intensive care unit at the Children's Hospital of Philadelphia.  Caden had other plans for my Friday night.  I'm okay with that.  His needs come first.  But, believe me, I would rather be almost anywhere but here.

I miss my family.  My heart aches every night as I say goodnight to Emily and Ethan over the phone.  Their sweet little voices telling me they are being good and that they love me tear me up inside.  I have missed so much of their lives to tend to Caden's needs. They are as invested in all of this as we are and they sacrifice as much if not more than we do.  They are amazing little superstars.

Caden, as like most of his hospitalizations, has his own plan.  We were supposed to go home today but instead have moved to a higher level of care.  Nothing is ever simple with Caden.  Nothing is ever as it should be.

Caden was admitted to the Children's Hospital of Philadelphia on Friday, March 7th after having over one hundred seizure like myoclonic episodes. His neurologist did a twenty-four hour video EEG which showed irregular brain activity but the episodes were not seizures.  Caden has a habit of testing "normal" despite having symptoms.  To quote Caden's long time private duty nurse, "Normal is a dryer setting."

After the EEG showed no seizures, Caden was transferred to the Integrated Care Service to address his neurological decline and increased feeding intolerance.  This is the floor Caden spends most of his time on because they manage all of Caden's many medical issues. His various doctors decided to get a bunch of "little" procedures done while in patient.  This took place yesterday.  He had his VP shunt clamped off. This was done because Caden prefers to lay flat or even hang upside down.  This is quite the opposite of what you would expect for a boy with hydrocephalus and reflux.  Clamping the shunt would prevent it from over draining if this is why he prefers being supine.  Caden also had a muscle biopsy done to test for any type of muscle disease which may explain his physical regression.  An endoscopy was performed to make sure his stomach and esophagus were not damaged and his salivary glands were Botoxed to reduce saliva production in hopes of reducing his gagging and vomiting.

Three hours later he was out of surgery and I was taken to post-op.  He was not doing well. Usually he comes right out of anesthesia and is rather alert.  He usually only has minimal amounts of pain that can easily be suppressed with Tylenol.  This time was different.  He was in a lot of pain, was having trouble breathing on his own and was vomiting.  He went back to his room on nasal canula to assist his breathing, he remained hooked up to I.V. fluids because he was throwing up all of his food and he was given Tylenol for the pain.

By the evening, he was weened off the oxygen and was breathing well on his own but his pain had increased along with the vomiting.  He slept all day, appeared very weak and lethargic, and only woke to scream louder than he ever has before due to intense pain.  This happened all night and throughout the day today.  He was hard to wake all day, continued to vomit and had extreme episodes of pain that seemed to be coming from his head.  His neurosurgeon ordered a CT Scan which of course came back "normal" or at least unchanged but they moved him to the PICU anyway so he could be closely monitored.  They performed a shunt tap which was a bit off and they may repeat it tomorrow under sedation to get a better understanding of what is going on.  Caden is still on I.V. fluids only and hasn't had any nutrition or food in two days.  He has lost a pound since being admitted.

Because of his inability to gain weight and grow, his G.I. doctor wants to put him on TPN (Total Parental Nutrition). This means that all of his nutrients would be delivered intravenously and he would be hooked up to a pump for at least twelve hours a day.  Matt and I have been trying to avoid this.  Caden was on TPN for a couple of months last year while hospitalized and had more problems than I have time to discuss.  Now they are talking about sending him home on this.  There are so many risks but we have no other option at this point. He is getting weaker and not growing and we must consider his quality of life. He will be placed with a Broviac on Monday.  This is a port in his chest which goes directly to a central vein.

This is how our son will eat over the next few months.  It involves a lot of care and many precautions must be taken when hooking him up.  There is a high risk for infection and clotting.  I have been dreading this for so long but it has now become necessary to keep him alive.

Caden will remain hospitalized for at least another week. This is assuming things run smooth and as I said before, Caden doesn't believe in having a plan.  We will continue to take it one day at a time.  Caden will work hard to get healthy as he is tough and never gives up.