01 February 2016

Improvement...but docs take the pain meds away again...

Brian slept on the couch.  I curled in a ball in the chair.  Bennett slept soundly in his bed nearby.  We waited for the doctors to arrive.  Hours went by. 

Finally, around 9:30am, we asked the nurse to call the On-Call Attending Physician, the doctor ultimately responsible for Bennett's care this weekend.  I was fired up to talk to this doctor about the train-wreck of a protocol that was given Saturday night.

The On-Call Pediatric Surgeon, who is not our primary pediatric surgeon, but a colleague who was on call for her at the hospital this weekend, came in with two Medical school residents trailing behind him.  He is a big tall bald man who ironically has the last name of Little.

He shook our hands and then asked how the night went.  We explained it had not gone well. But, we explained, things turned around once pain meds were given.  The doctor seemed uninterested.

The doctor brought us over to the computer to show us Bennett's CT scan.  He seemed to want to prove to us that Bennett had a belly full of stool - a fact that neither Brian nor I disputed.

After spending a lot of time explaining how much bowel was in Bennett's tummy, the On-Call Attending Physician made his case, repeating what the Medical Resident had told to me the morning before: Bennett's pain problem is his ultimately pain meds - pain meds caused slowed gut, backed up gut is causing pain.  

I said, "we agree that Bennett was backed up and needed to be emptied.  I'm with you on that.  But the reality is we don't necessarily know if his constipation is due to the pain meds.  He may also be backed up because the pain in his rectum is so intense that his bowel muscles are refusing to push the stool through."

The On-Call Pediatric Surgeon surprised me when he acknowledged that I had a point.  But then he repeated: pain meds cause constipation - we need to stop Bennett's pain meds for him to get better.  

I told him again that I understood that pain meds slow the gut.  But I also explained that we have witnessed our child in excruciating pain over the last 11 days and that I was unwilling to allow it to go on any more.  I explained that I could get on board moving away from opiates, if that was possible.  But, what I would not get on board with is my child being left to needlessly anguish in pain again.

I offered multiple other ideas to the doctor in my effort to think outside the box: what about an epidural? What about a shot to numb the rectum area? What about the new pain medicine Relistor?

The doctor shot down each idea in a way that made me feel that the only thing he was interested in was hearing me agree with his plan.  His plan was to stop the opiates but start a new pain medicine called Tramadol.  He also wanted to start Bennett up on continuous tube feeds at 25 ml/hr and give a stool softener.  I was fine with all of that, except pulling him off the pain meds.

I said, "so, let me make sure I understand, is the next 24 hours basically a dance?  Are we basically going to try to get his gut moving while also trying to keep him comfortable?  So, you tell me if we are where we need to be on the gut and I tell you where we are with his pain?"

The doctor looked straight at me and said dismissively, "yeah, maybe you should be more mother and less doctor, work with Bennett on some calming exercises and leave the doctor stuff to me."

I looked him back square in the eyes hidden behind his thin glasses and said as clearly as possible: "I'm fine with whatever we do as long as he does not suffer.  I will not watch my child in pain any longer."

And off he went, with his medical students trailing behind him.

We waited for some time to see what orders the doctor would put in.  Would he take away all our pain meds?  Was I going to have another day to watch Bennett struggle?  Was I going to fight this team of doctors all day long?  I was fully prepared to be the biggest thorn in their side.

The nurse came in shortly after the doctor's and my conversation and helped me see what orders might have changed.  If the doctor orders meds, they can be given.  If he doesn't, then we can't give pain relif.

Thankfully, we realized they had not adjusted his pain medication, they had only added two new medicines and a tube feed.  The nurse was allowed to give the pain meds PRN (which is "as needed").  I made sure to ask to get the pain meds every time it was available in order to stay on top of the pain.  But I was full of anxiety all day.  When would they pull the order and stop his pain meds completely?

Thankfully, they didn't.  And so, we continued the day as normal.  The nurse and I worked as a team to keep Bennett comfortable.  He received all of his pain meds on time, except Hycet which we gave to Bennett only twice in the day, in the moments when his pain could not be controlled.  For the most part, his pain was much better.

This was a smile I was able to capture today while Bennett was playing with his Power Rangers, something he hasn't felt well enough to do since his surgery.

The colon clean out had been very successful.  Bennett was starting to feel hungry throughout the day and started asking for food.  By the end of yesterday afternoon, he was beginning to smile and play with his toys.  (His playing with his toys, I have realized, is a gold standard of how Bennett is feeling.) Bennett even felt good enough to Skype one of his buddies at the end of the night.

I could tell I was going to finally be able to sleep.  Around 10pm, Bennett and I turned off the lights and both fell to sleep.  Of course, I knew we'd be up early for a 4am X-ray and bloodwork.  But for now, I could sleep knowing Bennett was happy.

So, imagine my surprise at 3am this morning when I see a medical resident standing silently over my child's bedside, his nurse standing still near by.  They were counting his breaths.  "We are concerned about his breathing," the doctor explained.  "We aren't going to give him any more narcotics because they supress his breathing."

No meds again?!  I can't do this.  I won't do this.

I explained I didn't want him to be pulled from his meds because then the pain gets out of control and we must spend hours trying to catch up.

The nurse explained that yesterday he was breathing comfortably at 22 breaths per minute, now it's 10.  Yesterday, his heart rate was, at the lowest, 71 beats per minute, now it was 50.

Obviously I was concerned as well.  Surely I didn't want to see something happen to Bennett.  I didn't blame the doctors, I just felt scared.  We had had such a good day yesterday.  Why this?!

I quickly consulted a doctor friend: "should I be concerned??  Is he now having lung issues?"

My doctor friend asked how he looked and what his pulse ox looked like. I told him Bennett looked great. He was alert and talking, albeit sleepy.  His blood oxygen was 99.

My doctor friend reassured me these signs are not likely respiratory distress due to pain meds but signs that we are finally controlling pain well.  The reason his breaths are slowed?...because he is finally relaxed.  The reason his heartrate has slowed?...because his body is not feeling pain.  Anesthesiologists actually use both of these signs are measurement of patient's pain - if, under anesthesia, a patient's heart rate and breaths per minute go up, the anesthesiologist actually knows it is the patient's body's indicating there is pain.  My friend who is a doctor reassured me that Bennett's stats, even though they were lower than usual, were nothing to worry about.

I presented this perspective to the 5 Medical Students who just came in the room about 10 minutes ago.  The lead Medical Student agreed I had a point.  But he explained neither he nor I had the power to change what was.  (He alluded to the On-Call Pediatric Surgeon whose orders everyone was having to obey).  The lead Medical Student said, let's "see how he does this morning with his pain."

I can't help but feel a bit manipulated by the doctor.  Was this the plan all along, to keep the meds for a day and then just take him off of them?

I am trying to remind myself that people would never be manipulative with my child's health or well being.  I am trying to remind myself to trust the people who are charged with caring for him, not distrust them.  But it's hard.  Sometimes, I feel like I have to spend my time fighting against providers at times, rather than working with them.  This On-Call Pediatric Surgeon has shown me no different.

When I asked the doctor, "is this a dance," what I was asking is, "are we working together as a team - are we depending on each other - I depend on you as an expert of post-operative care.  And you depend on me as an expert of my son's well-being?"

Instead, of working with me, this doctor decided to insult me - to invalidate my knowledge, experience and power as a mother and to discount my pleas to relieve my son's pain (calming exercises!?).

No, dear sir, I am not going to leave the "doctor" things to you.

I am not a doctor.  I am so much more.  I am the coordinator of my son's care.  I am the one who birthed him. I am the one who has been at his bedside through every one of his 7 surgeries.  I am the one who has the most complete picture of his medical history.  I am the one who knows more about his life-threatening disease than you do. I am the one who recognizes his emotional, physical and educational needs.  I am the one who is responsible for his success in life.  I am the one who loves him and will fight fiercely for him.

I am not going to leave things to you.  To get to him, you must go through me.

I don't know what's going to happen today.  Bennett has not had a bowel movement since his colon clean out.  I know that is to come.  I worry that he is going to struggle with that if he doesn't have pain under control.  But I also know that he is lying next to me still sleeping soundly.  So, for now, I wait...I wait until the On Call Pediatric Surgeon arrives (which I doubt he will any time soon, if at all) and I wait for Bennett to indicate when he needs relief from pain.  Maybe, maybe, neither is to be feared.  Only time will tell.

But I will risk being labeled a hysterical mother.  I will risk being perceived as a mother who can't bear to let her child cry.  But I will not risk my kid going back through the hell from which he just came.

This is not just about Bennett's pain anymore.  It is my own pain that I will not tolerate bearing any longer.


  1. To me, sounds like this On Call So-Called Pediatric Surgeon needs a heart transplant.

  2. Great comment above. I couldn't have said it better. Breck, you are an amazing mother!

  3. You are my hero, Breck! Go get 'em!

  4. You are my hero, Breck! Go get 'em!


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