a new normal. again.

Summer is in full swing which means constant sleepovers, late night fires, gooey s’mores and wet swimming suits. It’s hard to believe the kids have only been out of school for five days as it seems like much longer already. We are still in planning mode trying to get the older two into some specialized one on one sports training, private golf lessons for Brad and possibly a golf league for Trevor. Ryan is just doing his usual OT and PT every week and enjoying being able to sleep as much as he wants or needs.

This morning Travis and I headed to Omaha with Ryan for an appointment with his old GI doctor who moved to a new practice. I can’t tell you how glad I was to get her opinion and expertise on everything we are facing with Ryan. These past few months were painful dealing with the old clinic which I am not fond of. Let’s just say I have high expectations, and I’m sure some of that is because I am a nurse and know what kind of care we should be receiving. So when someone tells me something I know isn’t right or takes too long to return a phone call or give us results, my patience wears very thin.

I think you all know we had a precarious couple of weeks before our Make a Wish trip when Ryan wasn’t pooping, was gagging, occasionally throwing up and very lethargic. We nearly cancelled our trip and put him in the hospital just a few days before we were scheduled to leave. God was so faithful to see us through and grant us an amazing time together; it was a trip we will all cherish for a lifetime. When we came home Ryan went right back to his constipation issues and is again having lots of problems.

After explaining everything to the doctor, she confirmed what we already suspected – Ryan’s intestines are not working. He has dysmotility which is basically that the peristalsis to move food/stool through his GI tract is not effective. He is losing strength systemically and has been for some time. Anyone who sees him frequently knows he is getting weaker. He falls more, is more flaccid, can’t hold his head up for very long and is almost always slumped forward. If his head is up, his pelvis is shifted so he isn’t sitting on his butt but instead is leaning on his lumbar spine. Eventually he will have a hard time swallowing food and will start choking. With the skeletal muscle weakness comes smooth muscle weakness; these are the muscles that contract the hollow organs (blood vessels, the gastrointestinal tract, the bladder and uterus). Because we don’t know what is wrong with Ryan and do not have a definitive diagnosis (and never will) we have no idea what is going on in his body and have to treat him according to his symptoms anticipating what is coming next. We have always said there are only two things we care about with Ryan: 1. for him to be happy and 2. for him to be pain free. As long as those two goals are met, Travis and I are OK. So in discussing our options, this is what she presented us with:

1. Travel to Cincinnatti for some invasive testing to see if there is a specific area where Ryan’s colon isn’t moving and possibly face a resection of that area if needed.
2. Travel to Cincinnatti for a week of training to learn how to correctly and effectively give daily enemas. Cincinnatti Children’s has a world renowned GI clinic with specialized equipment, testing and physicians not available in Nebraska.
3. See a surgeon at Children’s in Omaha and discuss having surgery to put in a cecostomy.
4. Play with his Miralax and Senna doses and keep upping them until Ryan is stooling every day or two.

This was a very emotional appointment, but a much needed discussion at this point. I came home with a migraine from the emotional stress, but I was so happy at the same time to know we have options and a physician who wants the very best for Ryan and who supports our choices. She was so empathetic and even teared up when I was crying. For now, we are doubling his Miralax so he will now take four adult doses a day, and we are doubling his Senna dose as well. At this point, even with all the meds we give him daily, he hasn’t pooped for five days. He simply isn’t moving anything in his intestines. And with that dysmotility comes the risk of major infection, obstructions that require surgical intervention and lots of pain often with vomiting. Something has to be done to keep him comfortable and prepare for the next step of weakness when it comes. It’s a new normal. Again.

Travis and I have decided to increase his medications but also pursue the surgical route at Children’s in Omaha; we will not be going out of state. I found this description on the internet and think it’s a pretty clear cut picture of what exactly a cecostomy is since I’m sure none of you have heard of it.

Cecostomy is a surgical procedure that is used to clear the bowels of fecal matter. It’s typically used for children with fecal incontinence related to severe disorders. Fecal incontinence is the inability to control your bowels, which can involve symptoms ranging from severe constipation to having a bowel movement at an unexpected or embarrassing time.

Children with fecal incontinence often have severe constipation. In some cases, liquid fecal matter bypasses the solid fecal matter and leaks out, which can cause embarrassment and frustration for the child.

Cecostomy differs slightly from the traditional enema that is used to relieve constipation. An enema is given directly through the rectum to promote the release of fecal matter. But a cecostomy is known as an “antegrade enema.”

In the cecostomy, a tube (catheter) is used for the procedure. This catheter is inserted into the cecum, which is the first portion of the bowel, or large intestines. The cecum is located in the lower right abdomen. Liquid medication is injected into the cecum through this tube, which helps coax the fecal matter out of the body through the rectum.

As the doctor said, it’s like a daily car wash for the colon. I like that description. For some reason it makes me smile because it’s a vivid picture. I get it. The cecostomy tube looks much like the gastrostomy tube (Mic K button) Ryan has had on his upper left abdomen for seven years. It will be flush against his belly. Every morning or evening we will wash out his colon with saline or whatever fluid we are instructed to use. It is as simple as hooking up a bag of fluid to the opening, flowing it in by gravity then waiting for everything to come out the other end which usually takes about 20 minutes. It sounds overwhelming but I know it will be come our new normal, and we have had a lot of those over the years. If there is one thing we have learned, it’s how to be flexible and adaptive. Ryan is constantly changing and we have to change with him. We know our time with him is limited and the time we do have is slowly being taken from us. So if this is what it takes to keep him comfortable, happy and pain free, then it’s what we have to do. And honestly, I’d much rather learn to do this procedure every day then have to mess with increasing his medications all the time and praying his stomach doesn’t slow down causing us not to be able to get all the stool softeners in him. This is a much more reliable, safe way to handle his large intestine not working.

I am not going to pretend this has been an easy day or a quick decision. I’m an emotional mess because it has been a slap in the face. A reminder that Ryan’s health is declining. Sorrow. Fresh tears. An ache in my heart. Fear of the future. A longing for the days of old when we didn’t worry about how many days had passed between poops. Just a day when we didn’t have to talk about poop. But this is what we have. A new normal once again. Because this is what the Lord has given us for today. This is what captures our thoughts and overwhelms our hearts. Ryan is getting weaker and he cannot poop on his own anymore. It’s another loss. Another battle. Another worry. Another procedure to tuck into our day.

There was a season when seizures took over my thoughts. When all I saw was seizure after seizure after seizure. When I prayed and prayed for them to stop. Days when I could tell you exactly how many seizures attacked Ryan’s body. Lists of numbers for each day of the week. I used to plead with God for a medication to slow them down. And now the seizures have become a member of the family. They are a comfortable sight. A well worn part of our day. I don’t spend my time worrying about the seizure monster because now the seizures are familiar and expected. I gave up that fight and have accepted the damage they continue to do to Ryan’s brain. It makes me so very sad to admit it. But in its place is the weakness I am struggling to face, unable to accept. I hate looking over at my son and seeing a slumped, drooling little boy who can’t hold his head up. I long for the days of old when Ryan had the best posture of anyone in our family. Shoulders back, head held high. But those days are gone and in their place is a little boy who is slowing declining. And I can’t do anything to stop it. So I will spend my energy dedicated to keeping my baby safe and content and free of pain. I will love him, spoil him and cover him with kisses. He will hear the constant singing of I love you’s and never doubt the security of his momma’s arms. And at the end of the day, when darkness falls and quietness captures our home, I will lay my head on my pillow thanking God for another day. For the gift of more time. I don’t have any idea how many more tomorrows the Lord will bless us with to love on our boy. I pray there are many. More than I can count. No matter the number, no matter the span from here to eternity, my Ryan will know he is loved and wanted and accepted. This new normal isn’t ideal, but it’s all I’ve got. I will find the blessing and praise God for His provision in the changing seasons.

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2 thoughts on “a new normal. again.

  1. Oh, Kim, my heart goes out to you and your family! I can’t begin to wrap my head around how painful it has to be, to watch your precious little boy slowly fading away. But your family continues to be such an inspiration to us all. I’m sure you would much rather have a “normal normal” , where you didn’t have the circumstances that lead you to be an inspiration. But you are faithful to God, as He continues to be faithful to you. I pray for the peace and comfort of God will fill your heart. Thanks for sharing.

  2. Kim, I am so glad what you shared on this. Our Bilbe study group got a prayer for a boy who has bowels accidents and he will be in Jr. high next year and kids so make fun of him. Been praying for Ryan every day and Nate. God Bless you all.
    Praying,
    Delores
    Say how is Tara doing?. Have not seen any news on her site for awhile. Sure been praying for her.

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