You've got to be kidding me...

It won’t stop, the episodes will not stop. Only 5 days after our discharge from the hospital we heard the moans and rustling from Cameron’s monitor last night at 1:30am. We went to his room and there he was curled up in a ball, neigh neigh (aka stinky headless dog) thrown to the side, his chest rising and falling with so much effort. He moves from one side to another trying to get comfortable with no success.

Zofran is given in hopes of aborting the episode, 12 hours later he was still in the episode, 2 additional doses given. The vomiting is not as frequent, but the pain is there. We have lost Cameron again. He barely speaks to us, only in a whisper, we must place our heads right up to his mouth to hear the one or two words he lets out.
In a stroke of luck we had a scheduled GI appt today for follow up from the recent hospital stay. Off Cameron and I headed at 1:30pm, the entire time constantly checking my rearview mirror to see if he was moving, breathing, was he coming back to me? It was time, we were at the 12 hour mark.

As we walked into clinic at 2:30pm he was coming around, we saw the GI Dr. and Cameron was back, talking in his full voice, playing with the light switches and so on.

The Dr. and I talked at length about the situation, 1 in every 8,000-10,000 children are diagnosed with CVS, he termed it not uncommon. I wonder how many have CVS and Hydrocephalus? God, I’d like to talk to those parents. Dr. says he’s working on finding out who at CMH falls into this category. It’s obvious every child is different and while one drug will work for one, it will fail for another.
Periactin (our current drug) has failed, I think that’s obvious. So we are moving on to Propranolol a non-selective beta blocker. This is used in heart patients who have suffered a heart attack to lower blood pressure, treat tremors, hypertension (high blood pressure), heart rhythm disorders, and other heart or circulatory conditions. It is also used to treat migraines – thus the reason we are using it. CVS is often referred to as an abdominal migraine.

Here’s the hang up with Propranolol for any child, and Cameron of course throws a curve ball into the mix. This drug can cause Bradycardia (a slower than normal heart rate.) This is something we struggled with when Cameron was a preemie, they were called “Bradys” basically his heart rate drops too low and he would stop breathing.

The good news is that now he’s older and while it’s not going to make him stop breathing, it can cause too slow of a heart rate & blood pressure. This would lead to fainting, being very tired and generally weak. Now, we won’t know if Bradycardia will prove to be an issue for Cameron until we try this med, so we started it tonight and Cameron will require regular heart monitoring to be sure he’s doing fine on the drug.

While I know there is a good chance he’ll be fine, I am now freaking out that he’s going to faint somewhere and hit his head.

The other issue with this drug is that another sign of a shunt malfunction is… you guessed it Bradycardia!. This is in effect one of the main vitals they watch every time we are in the hospital. A typical shunt malfunction presents with headache, vomiting, and once bradycardia and hypertension (Cushing’s Reflex) show to be problematic it’s a sign of need for immediate surgery.

So we’re going to give Cameron a medicine that could make him Bradycardiac ? Yes, that’s right. I am not ever sure how I feel about this, but I’ve spoken with the doctors and Neurosurgery was consulted and they are in agreement with this plan. So I just have to go with it for now and hold it hope that he tolerates this medicine and the specialist in Milwaukee will have something to save us all from this misery.
And of course just as we got on the road home Cameron slipped back into the episode. YOU HAVE GOT TO BE KIDDING ME.

So we stopped at the Oasis and gave him Zofran, which he promptly puked right up. I give up.

It’s now 10pm and he is sound asleep and we believe out of the episode.