10 February 2017

Day 3 - Pain Control

I haven't written today mainly because Bennett hasn't felt well and has needed both Brian and me to comfort him most of the day.

Bennett's night last night went relatively well.  The biggest concern during the night was that Bennett's breathing slowed with the pain meds so there was a desire to minimize his pain medicine usage to prevent him getting into a danger zone with his breathing.

The main thing that we struggled with today was pain control.  We started out with continuous pain medication and a PCA (a button that allowed Bennett to click every 6-8 minutes, whenever he needed more pain medicine).  Due to slowed breathing, Bennett's meds were changed to oral Hycet with access to Dilaudid every few hours.  Still, throughout the day, we couldn't get him comfortable.

Bennett would be so upset at times that he'd beg for the room to be quiet and for "nobody to talk" or make a sound.  He would try to take deep breaths but couldn't seem to breathe deeply due to abdominal pain.  He didn't eat anything by mouth today, even though the doctors encouraged him to eat.  And he didn't play with any of his toys throughout the day.

At some point during his begging for the room to be quiet, we began to recognize that he specifically wanted nobody to talk about his care in front of him - not to him, not with him and not by him.  Nurses and doctors would come in cheerfully to explain what they were doing and he would cry out for them to stop, wanting none of it.

Eventually, recognizing he was overwhelmed by any stimulation or information at all, I put a sign on the door asking anyone who came in to not talk to him about his care.  This was actually kind of nice because it allowed for the more adult "scary" conversations to be taken in to the hallway instead over his bedside within his earshot.

At some point, Brian and I began to wonder how much of his pain was true pain and how much was possibly anxiety from the beeps of machines, the cords that hang off of him and from the people who seem to be wanting to check him all the time.  Our suspicions were raised when Bennett would whimper through tears how scared he felt when clinicians would come to the room.

While Brian was sharing this with his Mom (who is a nurse) via phone earlier in the day, she mentioned that he might do well to be given an anxiety med. Brian and I thought that was a good idea so we asked the doctor. She agreed and after reevaluating his meds decided to give him Valium later in the evening.  From what we have accessed so far, it seems like the medicine regimen with Valium has been helpful.  He seems much calmer both when asleep and when awake.

We have tried other tricks to help him feel more comfortable - like adding Zofran so he's not nauseous, slowing down his tube feeds so his tummy is not hurting and venting his tummy with the g-tube to let out any painful gas.  But it's always so hard to know what's causing pain when children are so young and can't fully describe why and where they are hurting.

The highlight of our day today was getting a visit from Oliver and Avonlea this afternoon.  It was really wonderful to see them, along with my Mom and Dad who have come to stay with them while we are in the hospital.  Bennett really enjoyed seeing them.  Avonlea was super sweet, at one point, holding Bennett's finger despite the IV on his hand and, at another point, rubbing his head to make him feel better.  She seemed concerned and curious about his condition but not afraid.  Oliver was very tender with Bennett telling him he thought he was very brave.

It was good to have my parents here - both because I was able to see the kiddos and just get a little break (my Mom stayed with Bennett while the rest of us went downstairs to the cafeteria to eat) and because my Dad, who is a physician, was able to see Bennett's condition and help us find a way to get him moving.

The issue we had had all day was when we gave Bennett pain meds, he'd relax and fall deep into sleep.  When he was awake, he would be irritable and hurting.  Although we knew the doctor wanted him up and active today...and even though we knew the more he moves his lungs and abdominal muscles, the better he will heal...we couldn't seem to find a happy medium.  Even the sweet nurse who worked so hard for us today couldn't seem to help us figure out a way to keep him comfortable and awake.  Bennett hardly did anything today but sleep or wine in pain.

However, tonight, my Dad helped coach us through how to get him comfortable *and* moving.  First, we gave him a Valium to help keep him calm.  Second, we gave him his Dilaudid, a short-acting pain med to help him feel comfortable fast.  Third, we gave him his Hycet, a slower-acting pain med to keep him comfortable for several hours.  We let him sleep for about 30 minutes until the Dilaudid was wearing off but the Hycet was coming aboard.  Then, we woke him and told him we wanted to get him walking and coughing.  Drowsy, he protested but didn't fight us much.  Even though his eyes were closed, we kept reminding him that he had pain med and that this was a good time to move.  I explained that his lungs need some coughs even if they are small (his lungs were beginning to sound junky) and his muscles needed moving (the longer they sit still, the more stiff they become).

While he stayed rested, we tilted his bed as much as possible to make it so that we could get him up relatively easily.  I grabbed his catheter, his IV pole and all of his cords.  Brian and my Dad lifted him up to his feet as straight as much as possible so that he didn't even have to bend.  He opened his eyes and tried to not walk for fear of hurting but we kept encouraging him to walk to the door.  I imagine he felt so tired that he wanted to do anything for relief so he just did what we wanted.  But what we wanted was SO good for him.  He took abut 6 steps from the bed to his door and back again.  I used his siblings outside of the door as encouragement to do it one more time: "Oliver and Avonlea have to leave now.  Let's walk to the door and tell them goodbye."

Bennett did as we asked and we called Oliver and Avonlea to the hospital door to see Bennett and say goodbye.  Their faces were both a bit fearful to see Bennett looking so weak on his feet with Brian and my Dad holding him up and excited.  We all cheered for Bennett and told him how proud we were.  I think it lifted his spirits because he was proud of himself too.  We helped him walk the 6 steps back to his bed and we laid him down.  We encouraged a few shallow coughs that I think made him feel better.

Bennett stayed awake a bit longer before finally falling asleep in the most peaceful sleep I have seen since his surgery.  I was grateful to have had my Dad's watchful eye as it gave Brian and me confidence on how and when to get him moving.  The bottom line is we need to take advantage of the pain meds as much as possible.  As soon as he feels most comfortable, we need to get him to move.  It was just so hard earlier in the day because we never quite felt he was comfortable enough.

I am hopeful that this is a good sign he is healing and we'll seen more of this kind of progress tomorrow.  I look forward to seeing our playful Bennett again.

I will write more about his ostomy and where we are on that situation soon.  But it's much more emotionally intense for me to write about right now...


  1. I'm sorry that Bennett had a rough day. Post op day 1 can be rough, but he is so lucky to have his wonderful family there supporting him and encouraging him. As a chronically ill young adult due to a genetic disease and having spent hundreds of days in the hospital, having my family there got me through some very tough times.

    Two things I've discovered after having mulitple chest and abdominal surgeries is to "hug" a pillow when coughing. It really helps dull the ache when coughing post op. Also, if Bennett's doctors are ok with him eating, see if Bennett is interested in chewing gum to start. Chewing gum has been shown in clinical trials to stimulate the bowel post op and my children's hospital actually has chewing gum as part of their post op plan for scoliosis spinal fusion surgeries. It could also be a way to help him with the anxiety he's having about what's going on, kind of a "baby step" to eating and also it might help take his mind off of pain or what's going on.
    I'm sending strength and prayers to your whole family and especially you and your husband as you see Bennett and his siblings through this.

  2. Also, after surgeries where I didn't want to walk very much, I would walk like you did with Bennett and also sit in a recliner type chair with pillows supporting me. Anything to get me moving, coughing, and out of bed. Even now that I'm older, it helps to set goals like "sit in chair 3 times for x amount of time each day." For Bennett to help him feel in control, he could choose when he wanted to sit in the chair and maybe what song or part of a movie to watch while he's in the chair. If he's not up to watching something, maybe a countdown timer on your phone might help him feel successful in meeting in goal.
    You do such a fantastic job of getting Bennett through his challenges and are so sensitive to his needs. I'm just trying to share some of the things that my parents and I have learned over the years.I hope all of you have a calm night and will be praying for you. 💜

  3. Great ideas that Natalie has. I pray for healing and strength to come into his body and for peace and comfort for him and his Family.

  4. Thanks for sharing, although it's heavy!!!! You steadfastness may not feel so steadfast, but from my view, you are AMAZNG!!! I can't imagine the day-to-day strength you have to muster to see Bennett in pain. I pray for you!

  5. Great job with the note on the door!! I hope your sweet boy sees some improvement soon!

  6. Praying for all of you! Marilyn Graves

  7. May God keep and bless you all in these trying days. You are a light for your son and I know your grandparents feel as strongly as you about being a lioness protector for Bennett as well as needing some strength for yourself. May you find it within yourself and by knowing others out there, including strangers like me, are praying for your family.

  8. Man, I'm reading this tearing up for your family and your little guy (I found you via google looking for a review on chore charts and got caught up in your family's story).
    There came a time during the labor of my fourth child when the pain was so intense I couldn't have anyone in the room talk, not even whisper, the pain was so intense. It was like I had maxed out on stimulation and anything else just made it worse - I even shushed my dad who was reading scripture to me (which embarrasses me to this day) - and that was me as an adult who knew what was going on, able to communicate what I needed and knowing with my logical mind that the pain would indeed end and I'd have a beautiful baby as a reward for my labor. All that to say that I'm sorry for you had to go through all this, but I'm glad God was and is there with you. I'll be praying for little B and your family. <3

    1. Thank you so much for your empathy and perspective! Also, thank you for your prayers! Means a lot! <3


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