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Bennett has been re-admitted.

Saturday, January 30, 2016

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.

9 Responses to “Bennett has been re-admitted.”

  1. Praying for you guys each and everyday. Sending love from Tennessee! -Roanans Rebels

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  2. I have CF and have had a similar (but totally different experience). GoLightly will most definitely clean him out. They'll force him to drink gallons of the stuff if he needs it. It's just going to make things flow nice and easy once it works. It tastes god awful, they didn't have flavors the last time I did it, but usually they'll allow something like sprite or ginger ale to be mixed with it. Also I know it's horrible to have to drink that stuff, from experience the pain is awful, but the drink was just as bad. However, once it starts to work, and you start being able to go more readily it most definitely gives some relief, at least with my experience it did. I had to drink 4+ gallons of it and have a enema though. I was severely stopped up from my infection. It took about 4 weeks to get better and out of the hospital that time. Don't give up hope, everything will eventually get back to some sort of normalcy, it's just a little bump in the road for a CF'er.

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  3. Father God, I pray your healing touch over Bennett tonight in the Name of Jesus. I ask that you supernaturally touch his little body, and heal his pain from his surgeries, and restore his bowel function so he can feel better and be a little boy again. I pray that you would send your Holy Spirit right now to comfort his mama and daddy, and that you would give them both a peace that passes all understanding, as you promise in Your Word, and that you would give them the strength and wisdom to love Bennett through this time of healing and recovery. Lord, I pray for a miracle for Bennett's healing today, and I ask that you continue to show yourself faithful to their family, and give them a heart of praise in this storm. Thank You, Jesus, that you hear our prayers as mothers and fathers, and that you always send your comfort when we need it most.

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  4. So very sorry for sweet Bennett's suffering. We will lift him up in pray, and you parents and grandparents as well. This breaks our hearts for all of you. Wayne and Linda DuBose

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  5. The rectal pain you speak of hits way too close to home. My personal inflammatory bowel issues and severe constipation are made so incredibly worse by any sort of opioid use to control the pain of my autoimmune arthritis as well, esp following surgery. Knowing that Bennett is experiencing the worst pain I have ever felt in my 20 years on this earth at his young age makes me sick and angry. Breck...I am just so sorry. I am so sorry that your boy is suffering. I am so sorry that you and your husband have to see him this way. I am so sorry for all the hurt and pain that CF has caused your family. I am sorry. And though I cannot do anything to change the circumstances at hand, I will repeat: WE WILL NOT STOP PRAYING!!! For comfort and answers and a plan. Bennett deserves all those things and more.

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  6. Breck,

    Sending many prayers for comfort and peace- for all of you!

    -Ally

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  7. Dear Breck,
    I'm so sorry to see this post so soon after Bennett was discharged. Unlike some of the other commenters on this page I don't have CF or bowel/rectum issues so I can't claim to know what you are going through or offer advice... I can only offer my sympathies for such a frustrating journey, and my encouragement, so here goes... I'm so sorry that your little guy is in so much pain. I can't imagine what it must be like, as a mother, to watch your kid go through that. If this helps at all, I can tell from this blog that you are a truly outstanding mother. I have learned so much about the emotional as well as the medical side of being a parent to a child with a condition such as CF just from reading your blog. In addition to giving updates on Bennett's condition to friends and family who know you guys in real life, you are also doing very important work by educating the broader community about CF and CF parenting. I am a college student considering going into social work or medicine and your posts about explaining CF to Oliver and Bennett and managing and understanding their emotional needs have taught me so much about what the families of children with conditions like CF might be going through, and how parents and doctors/nurses/child support workers need to acknowledge the emotional toll of living with such a condition. Wow, that got long... tl;dr you are amazing. Keep on keeping on!

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