30 January 2016

Pain Control

Unfortunately, Bennett's last two days at home have been equally hard as those in the hospital. 

We have still not been able to get Bennett's pain under control.

Yesterday afternoon, about 24 hours after we had returned home from the hospital, while giving Bennett a dose of his Hycet, I realized half of the bottle was gone. 

It turns out that during the discharge process when we were given a pain med prescription, the script was accidentally written to cover pain lasting 2-4 days. Since we were using the higher amount prescribed, that meant we would be out of pain medicine by 48 hours of discharge. 

I was so upset. I knew it wasn't done on purpose, it was a genuine mistake. But pain med prescriptions are such a pain. By law, prescriptions for narcotics must picked up in person (no having your doctor "call it in") and there is never an option for a refill. This meant that my only option was to drive back down to Temple (1.5 hour round trip) to get more pain meds before the weekend.

I called Bennett's local Pediatrician (who is a godsend) and asked for help in getting a prescription for Bennett to get us through the weekend. Knowing our family and Bennett well, she was happy to help.  She actually raised a concern on the amount of Tylenol and Motrin he was receiving, particularly in light of how Bennett's liver is already compromised by CF.  (At that time, Bennett was already taking 1/3rd more Hycet than is typically recommended per day for kids. And we didn't see any end in sight as this medicine wasn't controlling his pain.)

The Pediatrician, Surgeon and I agreed that Bennett needed a pain med that we could continue to be dosaged up and be give more frequently but without the risk of overdosing him on Tylenol. Our only option was to stop giving Bennett Hycet and compound Hydrocodone separately instead.

So, yesterday morning I ran across town to pick up the prescription (which was significantly closer to our house than having to drive back down to Temple 30 miles away) and took it to a local compounding pharmacy in town.  

Compounding pharmacies are pharmacies that can basically make any med they want the want it. They can make meds in different forms and in different dosages. 

We needed a pediatric dose of hydrocodone without Tylenol.  I picked up and took home.

The sweet pharmacist who helped me is amazing. I will forever be grateful for the way she cared for me yesterday. She encouraged me to call with questions and explained that she would work with my Pediatrician to help us find a solution to get Bennett's pain under control. 

With her help throughout the day, we titrated the med until we could find an amount that gave Bennett comfort. 

It seems we have found a comfortable spot with pain meds, except that every time Bennett goes to the bathroom, he screams and kicks as though he is pooping pieces of glass. I'm not even kidding. Brian describes it as his responding as though he had been shot and or been stabbed and someone is continuing to move the knife around. It's been excruciating to watch.

When I spoke with his surgeon yesterday morning, she explained there could be pain due to suctures near the rectum where the resection of the bowel took place. But it seems like any passing of poop is intolerable to Bennett.

This is challenging considering we are also trying to tube feed Bennett every few hours (his appetite and interest in food have not returned). Every time he eats, he needs to poop. Every time he poops, he screams blooding murder.

So, we are monitoring the situation but leaning towards returning to the hospital if we can't control it soon. Between this and the morphine issues in the hospital, I would say Bennett has really been tortured through this ordeal. 

Brian and I are desperate for him to have relief. We don't understand the severe acute pain - why it's really happening, how long it's going to continue to last or how to stop it. But he needs a break. 

Bennett describes these poop episodes as being 10 and 11 on the pain scale. And we regularly hear him moan in pain saying, "I just want to feel better. Please make me feel better."

We keep upping his medicine dose again and again but, still, he describes his pain as being unbelievable and, still, we see his toes curl, his legs move about and his face turn red in anger. I have said too many times: "just be patient, it will get better." It's not getting better. We need to do something more.

If we go to the hospital, it will be to get IV drugs for pain that oral meds just can't address. We worry about increasing the oral meds so much that we may be making Bennett nauseated. 

We have not been able to start back his cystic fibrosis lung hygiene routine. This is of paramount importance. But it comes after making sure he is comfortable. 

Even as I write this, it's 3:25am. I am waking to give Bennett pain med every two hours. But between his pain and having to go to the bathroom, I have slept only one hour.

I will update as I know more.

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