A Challenging Cycle

I wish for once things went smoothly for my dear Ryleigh. It has been 36 hours since the finish of her surgery. She has not moved from her flat on the back position she arrived in. She is in pain and tries to use her pain pump but the medicine makes her extremely sick to her stomach. She rests with a cardboard bowl on her chest because she is afraid she is going to get sick all over the place. Her nurse last night came in every hour and Ryleigh complained about being really sick – so sick that she can’t take her liquid tylenol. Her tummy could be nauseous for a few reasons – her bowels have temporarily stopped working and that affects the stomach, her pain meds, and anesthetic. She has been given odansetrone and gravol but they don’t seem to get rid of the nausea for very long.

Ryleigh is so miserable that any smells like my coffee, my toothpaste, my lipbalm, my deodarant, my gum, my breath….cause her to be sick to her stomach and she is very quick to tell me so with her hand gestures and whispers (as it hurts to talk). It is hard on me because she does not want any interaction with anybody — so trying to figure out what she wants is hard. She even said that listening to us talk hurts!

Some of the pain team, surgeons, and nurses for the most part don’t understand why she is not recovering yet. They even said numerous times that the incision wasn’t that big and she should be in less pain. Really? I think they are looking at her as a patient who has not been chronically ill for almost 2 years. It has been hard on her body and perhaps she is not a regular surgical recovery case! I have had to advocate and let the nurses know about her history as they do not have the time to look through her huge file. This seems to help them understand why she may be struggling a bit more. It was a frustrating day yesterday.

However each day is a start over! Her night nurse was very understanding and saw Ryleigh as she was – a pain ridden, nauseous girl. She did her best to make sure all her gravol and odansetrone were given routinely so Ryleigh did not have to ask for it. She also took the time to discuss Ryleigh’s history with me and said that she reported to Ry’s day nurse about how Ryleigh is struggling. Also, this morning her surgical team came in with a different lead fellow or resident (I was not sure) and she confirmed that what Ryleigh is feeling is real. Even though in their experience she should be on her road to recovery that some children who have been chronically ill struggle with recovery a bit more. Also, some react to pain medication in this way and they have some other options but because she is on blood thinners and an IBD patient they have to be careful what they give her. They told her that this will get better but she is skeptical – she has been hearing that for the last two years and wonders if this too isn’t true?

All in all it continues to be challenging. I have to put on my Mama Bear hat and advocate for her today. She looks at me with her furrowed brow and big blue eyes with the look of “Mom, do something!” I continue to feel helpless in helping her feel better. But that does not cause me to stop doing whatever I can to get my girl back. Keep calm and carry on is a fitting slogan for me and I will breathe deeply and say it numerous times today.

6 responses to “A Challenging Cycle”

  1. Ms. M-G from Vanderhoof Avatar
    Ms. M-G from Vanderhoof

    Prayers and hugs, prayers and hugs. We love you all and send you thoughts of strength, love and healing.

  2. I wish things were going more smoothly too! I wish the road was fast and smooth. Instead, it seems as if it is bumpy and rough, full of twists and turns. It is the road you are on, though, and I am praying for smooth, wide paths ahead for you and Ryleigh and Chloe. May you have the fortitude to navigate each moment as you must. You wear the “Mama Bear” hat well and necessarily. Strength, healing and encouragement for today! Hugs!

  3. Jo, It brings me to tears to read about how much pain Ryleigh is in. She is such a wonderful girl. Both of you have amazing strength to endure all of this. I wish there was something I could write that could make a difference or help in some way. I pray that things get better for you and your family. Payten really loves the kitty and horse that Ryleigh gave to her and we really hope she can come over for a playdate one day.

  4. Joy’s operation was similar to Reighy’s but big incision. It was an uneasy balance between high pain and high nausea for several days – about 10 before being much better i think. It did get better though so that is the good news. Not sure if that is very helpful but wanted you to know you are in my thoughts…

  5. Ryleigh’s pain could be due to the real intolerance for pain that chronic pain can cause. It causes a cascade so that the normal stuff is tolerable but the new stuff is not. I read about it when searching for my own answers. Overload.

    I so wish that we could actually help beyond cheering her on toward the finish and giving you support from afar. But, we can be positive. Health will come, it will come, it will come, it will come. I will keep sending that out there. Hugs and kisses.

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