Yesterday afternoon, I came home to rest.  But instead, I just cried.  I cried and cried and cried until my cheeks were sunburned with tears and I was utterly exhausted.

My quiet tears moved to audible moans and eventually to inconsolable screams.

Brian and I had dreaded all day what was going to be happening that night to Bennett, our six year old having to endure a colon clean-out with very little pain meds while his rectum suffered excruciating pain still healing from rectal surgery.

How does a mother even comprehend and cope with that amount of pain?!  Surely, there is no pain relief for me either.

My anguish was overwhelming.  At first I felt anxiety and then sadness, helplessness and then anger...not just anger but rage.  Why was this happening?  Why has CF pushed our backs up against the wall like this?  Why has God abandoned us - abandoned Bennett?!

Last night, Brian stayed at the hospital with Bennett while he was undergoing the colon clean out.  I stayed at home, partly because I needed to rest and partly because I was in no emotional place to cope with Bennett's uncontrolled pain.

Brian texted me throughout the night.  For a long time, Brian kept texting that Bennett was doing fine, resting peacefully under the control of a muscle relaxer.

Maybe he was peaceful but I was not.  My heart was being torn in to a million pieces and I didn't know what to do.  I texted Brian about how angry I am at God.

In response, Brian sent me several verses from Job and Psalm that spoke the words we feel:



“Lord, you are the God who saves me; day and night I cry out to you. May my prayer come before you; turn your ear to my cry. I am overwhelmed with troubles and my life draws near to death. I am counted among those who go down to the pit; I am like one without strength. I am set apart with the dead, like the slain who lie in the grave, whom you remember no more, who are cut off from your care. You have put me in the lowest pit, in the darkest depths. Your wrath lies heavily on me; you have overwhelmed me with all your waves. You have taken from me my closest friends and have made me repulsive to them. I am confined and cannot escape; my eyes are dim with grief. I call to you, Lord, every day; I spread out my hands to you. Do you show your wonders to the dead? Do their spirits rise up and praise you? Is your love declared in the grave, your faithfulness in Destruction? Are your wonders known in the place of darkness, or your righteous deeds in the land of oblivion? But I cry to you for help, Lord; in the morning my prayer comes before you. Why, Lord, do you reject me and hide your face from me?”  Psalm 88:1-14 NIV 
Once Bennett's colon clean out began, Brian and I decided we could no longer tolerate what was happening. Bennett needed pain medication and we resolved to do whatever it took to get it.

I called from home the charge nurse and asked for her to page the doctor on call to give me an immediate call back.  Brian also asked Bennett's nurse who was supporting him through this clean out to get the doctor to come asap.

The doctor on call came and watched what was happening.  She could see Bennett was agonizing in pain and, with some pushing, agreed to care for his pain appropriately.  Within a short bit of being given pain med, Bennett was calm and in deep sleep.

It was all too much for me to handle to be far away from Bennett who was helplessly hurting and to be away from Brian who was having to absorb Bennett's pain alone.  I couldn't stay at home.

Our dear babysitter Peyton had come to spend the night last night to watch Oliver and Avonlea so I could rest and be ready for the next few nights at the hospital.  But I could not rest at all.  I decided to grab my stuff and drive the thirty minutes to the hospital at 1:30am.

Brian was shocked to see me at the hospital in the middle of the night.  I hadn't told him I was coming.  He was also sad because he had really wanted me to stay at home and get rest.  He had really wanted to protect me from seeing Bennett's suffering.

But after the inner desperation and rage that built inside me earlier in the day and after the overwhelming helplessness that overcame me as Bennett's colon clean out began to kick in from afar, I could not stand to be separated from my son and my husband.

I was so angry at the team's absurd approach to allow a child to suffer that I also came down because I couldn't miss a meeting with the Attending physician/Pediatric Surgeon who had made this call and would be visiting Bennett's room the next morning.

I will blog about that meeting and how our day went today soon.  But I wanted to share something that was comforting to me even in the midst of utter despair at seeing my child suffer last night.

Yesterday during my moments alone in grief, I asked my friend, Emily, who is an adult with CF, how those with CF cope with these kinds of terrible personal hells.  I asked, "Will Bennett suffer forever because of this? How much can one person handle?!"

She wrote words that I will forever hold on to...words every parent of a child with Cystic Fibrosis or any chronic disease should hear.  She wrote:

"Will it affect him? Yea.

What will he remember? How in the horror of the hospital experience, you and his dad were his relentless comforters and companions and advocates -- and never left his side. How he wasn't in any of this alone. How it was a family journey. How home is where the family is. How through the worst pain and fear and agony, we can survive... and rise and thrive again.

You have to keep just putting one foot in front of the other right now, in autopilot mode, until you get through the sludge and see the light again.

But you have to remember, this will be just one memory of one experience in a quilt of many more. And most of those other ones will be wonderful patches."

I have dreaded writing this post.  It makes me SO sad, so hurt, so angry, so disappointed.

We were simply not been able to get Bennett's pain under control while we were at home, despite that we were giving him more and more narcotics.  So, this morning, I went to the ER where they decided to admit him back in to the hospital.

Initially, this morning, the doctors were concerned about an infection (a very real risk after bowel surgery). So, we did a CT scan and blood work, which showed there was no infection.

However, the CT showed Bennett had a lot of backed up stool - backed up stool possibly irritated by the surgery but most likely made worse by a combination of pain meds (pain meds slow the bowel) and cystic fibrosis (thick mucus in the bowels negatively affects bowel function).

The surgeons have two working theories on what is going on with his pain:

1.) his pain may be being caused by a suture that is too low in the rectum area and will eventually be absorbed by the body...but not for several weeks...so pain just may not be controllable or

2.) his pain may be being caused by or exacerbated by poop that has has built up at the resection point where they did surgery and is pushing on the smaller piece of colon causing pain.

If the pain is being caused by the first, they don't know what to do.  If the pain is being caused by the second, they think "cleaning him out" will help.

So, we were readmitted this morning.

They have decided to give him GoLightly, which will clean him out. However, they do not want him to get constipated again so they don't want to give him many pain meds.

Imagine if the pain wasn't controlled on a LOT of pain meds, how hard the experience of having a colon cleanout on almost no pain meds is going to be - I have to believe this is going to be torturous for him.

The doctors have said that if this "clean out" works and yet he is still hurting, they have no backup plan.  They said they will start making calls and start researching to see what our options are.  But they said they don't know what to do about uncontrolled rectum pain.  But they agree it's excruciating to experience.

I tried to understand why we are having such a hard time right now.  Why is this so terrible?  The doctors said his CF, his age and this being his 4th rectal prolapse surgery are all making this harder and more awful.

On top of that, in a separate conversation, the doctor explained to me that the poop accidents we are seeing in Bennett's pants are because Bennett is going to have to relearn to some of this bowel control again.  Apparently, and nobody told me this before now, whenenver you mess with the bowels and rectum muscles, some portion of that control has to be relearned.  So, until he does, he will need to wear pull-ups. It may take 6 weeks to gain back function.

My kindergartner could eat and poop on his own two weeks ago now has to be tube-fed around the clock and has to wear pull ups.  It makes me so so sad.

I was able to get only 2 hours of sleep last night due to Bennett's pain med schedule and his screaming/moaning all night.  So, Brian met me at the hospital this morning with his bags packed and asked me to go home and sleep.  He asked me to let him absorb what happens with Bennett when he has a colon clean out after having bowel surgery with no pain meds.  

I have this terrible feeling of relief and guilt.  I am thankful I do not have to watch my son suffer today.  I have been doing it for more than a week and I'm at a point in which it is intolerable.  But it's a terrible feeling as a mother to know I get to walk away when Bennett cannot.

What was awful just got worse.

I don't want decorate another hospital room.  I don't want to open the drapes and see the sunshine Bennett can't enjoy.  I don't want bring my other two kids to see their brother who still cannot get relief.  I don't want spend another night on a too-small plastic couch being interrupted by annoying beeps and footsteps of strangers.

This is what it's like to live with Cystic Fibrosis: to dread every single day a day like today, and then to find yourself on a day like you dreaded, and realize, it really is as bad as you thought it was going to be.

We will get through it.  But my heart is broken.

I can't keep from singing the lyrics from the Imagine Dragons song, "On Top of the World": "I'm on top of the world, hey! I'm on top of the world, hey!"

Thank you to my sister, Brooklyn, for coming in this weekend to help us.  We know a lot of our family wish they could be here to help right now.  But we are thankful for and definitely feel their love and support from afar.

We have been told that in order to go home, we need to have a solid poop.  Since we had colon surgery, the doctors really need to have the confidence his GI tract is working appropriately.  We are expecting to go home Tuesday or after.

It's 1:23am and we have not slept yet.  We are settling in now to rest.  The surgical team will be waking us up for their rounds in about 4 hours.

Goodnight,

One thing I learned when we were admitted to the Baylor Feeding Clinic with Bennett for four weeks straight when Bennett was 18 months old was the power of decorating a hospital room.

4.) Use colorful balloons as corner decorations so everyone can enjoy.



6.) Light up a battery-powered candle to add some flickering ambiance at nightfall.



7.) Cover the nearest IV pole with Christmas lights to double as a night light.



8.) Throw in a cheap bathmat on the cold hospital bathroom floor.

There you have it!  Eight ways to make a sterile isolation room a home. :)

Shortly after I blogged last night, I heard Bennett pipe up in a sweet little voice I hadn't heard all day: "Mom, guess what?  I think I feel pretty good."

This was the first time it since the surgery that Bennett seemed to be genuinely feeling better.  I even took a picture to document.  Bennett didn't want to give a thumbs up but he said he'd give a sideways thumb instead.

Shortly afterwards, he pushed his morphine pump and fell back asleep.



About 30 minutes later, as I was trying to fall asleep for the night, I watched him shoot straight up in bed.  Bennett won't even let me move his bed up an inch due to abdominal pain so I was shocked to see him sit straight up with no support.

It turns out he was having a nightmare.  But, even still, it was evidenced his range of motion in his abdomen has increased.

I slept for only a few hours before I was awoken by Bennett's cries at 3am.  The nurse was here for her 3am blood draw.  Bennett had just had to undergo multiple pricks for a blood draw in the early evening so I was frustrated they need to draw blood again.  But we didn't have any choice.

Bennett was distraught.  I asked for MLA cream, which helps numb the skin at the blood drawing site.  But still he couldn't be calmed down.  Eventually, he pushed his morphine pump, which did provide him a little relief and brought with it some drowsiness.

I curled up on the bed with him and began putting my hands through his hair.  I figured that the body can't process too much touching at once.  Maybe, I thought, if I caress his hair and across his forehead, he won't be able to feel the blood draw quite so well.  I began singing nursery rhyme songs to him.  It took all of my strength not to get choked up while comforting him and singing nursery songs.  This wasn't the place I wanted to be singing to him.

I hate the sight of blood and veins so I had to carefully pay attention to Bennett while also overcoming my dislike for blood to make sure the nurses were moving along as fast as they could. The nurses couldn't seem to get a vein so I suggested they use a light to guide them.  Fortunately, they agreed that might be helpful so grabbed a powerful light to place under his hand to see if that would help.  That helped and they were able to get the blood and Bennett didn't even open his eyes.

When we are done, I said, "good job team."  The nurse said, "it was your singing that did it."  Then, Bennett opened his eyes to my surprise (I thought he had fallen asleep) and began to tell me how much I had helped him.  Whew.  Mom for the win.


Bennett finally did fall asleep, only to be woken up 30 minutes later for a 4am abdominal X-ray.

Thankfully, after that we were left alone until 7:30am when the Pediatric Surgical team came by to check on Bennett and give me an update.

Yesterday, Bennett's stomach was super distended due to gas (see left picture).  We used Bennett's g-tube to vent his stomach all night so things have improved some since then (see right picture).

Today has been fairly slowgoing for Bennett with regard to improvement.

Bennett is either awake and hurting or asleep.  He cannot move without it hurting.  Even accidentally knocking the bed will cause him to hurt.

He has not eaten or drunk anything all day.  His throat hurts from being intubated.  His abdomen from his belly button down is in pain.  He gets Hycet every 6 hours.  And, he has access to a morphine drip which puts him to sleep fairly quickly.

During the morning, they kept pushing Bennett to eat Popsicles, ice cream, jello, etc.  But by lunch time, they had put him on NPO (nothing by mouth).  The Pediatric Surgeon noticed his abdomen was distended and ordered an X-ray.  I am waiting to hear back more on what they are concerned about.

I pushed quite firmly today to see a Pulmonologist for a consult.  Bennett gets his CF care at Children's Medical Center in Dallas so Bennett's CF team is not able to monitor his lungs right now.  Surgeries and anesthesia put Cystic Fibrosis lungs at risk for infection.  So, I was adamant that I need to see a Pulmonologist by days end.

Thankfully they just stopped by.  The Pulmonologist agreed we can't do a Vest treatment right now due to his abdomen pain so Bennett's lungs are forced to stay lay dormant.  Dormant CF lungs are never good.  We need to get the mucus in his lungs moving.  But right now, there isn't much we can do.

I asked if we could up his breathing treatments and possibly look at another option for percussion therapy.  The team is going to see if the hospital has access to a Hill-Rom MetaNeb System or we will get our Aerobika from home.

Bennett's oxygen levels dropped from 98% last night to 87% this evening.  We think it's due to the morphine but we have added supplemental oxygen when needed.  I am praying we will get out of this surgery without a lung infection.