Trial and Error….

Hello friends!  It has now been 2 weeks since Cannon’s cecostomy tube and MIC-KEY Button placement surgery.  He is up and moving around well now.  Even getting a little adventurous at times.  If we are not bothering the button and he has his protective band over it……for the most part, he is fine.  It is still a very different story when we need to access it.  But, we have had success in taking it down from a 3 man to a 2 man job.  Which we were very thankful for as my mom, who was here helping us, had to fly home on Monday.  Mark and I have done both jobs but now we have kind of settled into a routine.  Generally, I hold and soothe Cannon while he pushes the solution.

Just incase you were wondering how this all works, here goes……….

Here is another photo of what the button itself looks like (above and below the skin)…..

 

And this is the tube that we connect to the button.  The white tipped end is inserted into the opened button and turned to lock.

 

Every day we prepare a mixture of various ingredients and fill 2 of these catheter syringes.

 

 The syringes are inserted into the opposite end of the tube and held in place while the clamp is released.  And the solution is slowly pushed in.  We have to clamp the tube to change syringes and then release and repeat the process.  Then, we disconnect everything, sit him on the potty, and wait for “the results.”  The solution can cause a decent amount of cramping, so we have to help him through it.  He has begun to express himself (!) saying “I’m afraid!”  When this happens, we often recite Isaiah 41:10 with him.  He likes it and it has a somewhat calming effect on him when he says it along with us.

“Fear not, for I am with you.  Do not be dismayed.  I am you God.  I will strengthen you and help you.  I will uphold you with my righteous right hand.”  (Isaiah 41:10)

We also can use previously mentioned social stories, favorite books, and even movies on our portable DVD player during these difficult, but necessary moments.  “The results” can take anywhere between 3 – 45 minutes to come.  And there are usually 2-4 waves.  Sometimes its hard to know if he’s done.  And making the wrong call and pulling the plug too soon is no fun!  The area around the button also has to be cleaned twice daily with sterile saline wipes.  And a gauze pad with a slit cut in it has to be re-placed around the button.

We have been working with the surgeon to come up with the right concoction of what to put in the tube.  For one week, we were just flushing it with a small amount (about 20 ml) of normal saline.  Just to keep it primed.  We were taught how to do this before leaving the hospital.  And practiced on a doll.

We visited the surgeon’s office for check in’s on Monday, Wednesday, and Friday of last week.  Friday we were there to be trained by a Nurse Practitioner on how to do the real deal…. the actual flush.  We were told to bring salt and Dawn dish soap with us!  Weird, right?!  The salt was to be used in making our own saline and the dish soap is used as part of the solution for the enema.  When we arrived, she began filling 6 catheter syringes with a combo of the saline and Dawn.  We struggled to get him to allow us to insert this much solution into his body.  He was fighting so hard that the nurse had to do the pushing and Mark and I held Cannon.  “The results” were less than satisfactory and he was cramping badly.  So, she mixed up enough for 3 more syringes.  And again we got little “result.”  The Nurse Practitioner told us that we were going to call it a day and should phone the surgeon when she was back on call the next day.  To decide what to do next.  We had been trying to avoid having to use liquid glycerin in the tube because of the increased chance of intense cramping.  But it was looking like our only option.

I spoke with the surgeon on Saturday of last week and she confirmed this.  She wanted us to use 24ml of glycerin and 60 ml of saline combined.  Our pharmacy would have to place a special order for this and it would take several days.  So, we had to go to every Walgreens in town collecting boxes of 6 small glycerin enema syringes.  And squeeze each little one into the cup of saline.  It took one box of these tiny syringes to meet each day’s requirement.   We tried this until Wednesday and were seeing much improved “results.”  But there were signs that it still wasn’t enough.  So, we were told to bump up the quantities to 36 ml of glycerin and 90 ml of saline.  This has been working pretty well and now the question is when we will stop all his motility medication and truly test whether the formula is enough.  I am currently waiting (and waiting) on call backs on that one.

One of the other challenges we now face is how reliant he has become on that band we had made for him.  The abdominal binder with a donut velcro-ed inside.   A local prosthetics company made this to protect the button and so as not to allow him to pull it out.  He completely freaks the minute you start to touch it and does not calm down until its back on.  Even if you aren’t touching him or manipulating the button at all.  Not a problem we ever anticipated when all this began.  But better than the alternative, I guess.    We realize this is a potential problem down the road but feel that it is most important for him to finish healing process before we take this comfort away from him.

 

We didn’t realize a couple of things until after the surgery.  First, how rare this procedure was.  MIC-KEY buttons are common with gastrostomy or feeding tubes.  But Cannon’s is a MIC-KEY Button with a cecostomy tube….which accesses his colon not his stomach.  None of the doctors or nurses we encountered in the hospital had ever seen one.  Even a charge nurse who had been there 33 years said that she had never sent someone home with one of these.  Crazy, huh?!  Finally, we certainly didn’t know there would be so much trial and error with this.  We just figured that after the surgery, there would be a set medicine and dosage.  And that his body would respond quickly and accordingly.  But, it hasn’t been that easy.  Unfortunately.  And that is not something that we can really explain to Cannon.  So, now, all we can do is just keep at it until we find just the right formulation to make this kiddo get perfectly cleaned out and feel 100%!  It’s an exciting possibility that only gives him a chance at a better quality of life and the ability to try to reach his full potential!  So for now, we will keep praying and hoping…..and continuing to deal with this trial and error.

 

I leave you with a few scriptures my soul has found rest in this week. I pray they give you hope and comfort as well!

“The Lord is my strength and my shield; my heart trusts in him, and I am helped.”  Psalm 28:7

“No test or temptation that comes your way is beyond the course of what others have had to face.  All you need to remember is that God will never let you down; he’ll never let you be pushed past your limit; he’ll always be there to help you come through it.”                  1 Corinthians 10:13

“Those who hope in the Lord will renew their strength.  They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.”  Isaiah 40:31

God bless you ALL!  🙂

4 thoughts on “Trial and Error….

  1. Thanks so much for the article…it brought me up to speed on how to pray for you. Amazingly, the verse I am praying this morning is Psalm 27:13 “I would have lost heart unless I had believed I would see the goodness of the Lord in the land of the living”. I am soooo very thankful for your trust in the Lord even in these very challenging times. I can’t imagine what it has been/is like, but your faith in the Lord and His Word are tremendous testimonies! May the Lord strengthen your faith as He proves faithful!

    • Thank you so much Pastor! Your weekly sermons and constant inspiration and support are helping us through this more than we can say! We are beyond blessed to call you our Pastor and thank God for you all the time!

  2. Hello!
    I found your website while searching for info about a MIC KEY button placed for a Cecostomy. Your blog is wonderful and your faith is inspiring! In short, my daughter (has Cystic Fibrosis) originally had a Chait door, but when they changed it out they could not get the Chait back in…instead they put in the MIC KEY. I thought I would write you because, like you said, no one really knows anything about it! We had no real training in maintenance. Thank you in advance for your help! Katie

    So here it goes…

    Do you/ Are we supposed to turn the button daily?

    Does it ever hurt your son when you close the button?

    Is the button sensitive to touch or when bump?

    • HI KATIE! I am so glad that you found us and said hello! I am just so sorry it has taken me some time to get back to you! We have been soooo busy as of late and blogging has been super low down on the priority list! Wow! I can’t believe your Chait wouldn’t go back in! That is a possibility I didn’t realize existed. Were you ever warned that could happen? I was told that if he yanked out the Chait that it could be hard to replace but not if it was taken out routinely. Sheesh! I am disappointed to hear that you got no real training on care. We got more info on the Mic Key because we were inpatient at the time of his surgery. So, a specialized nurse was sent by several times to train both my husband and I. I was so so very thankful that we went home somewhat confident on how to care for it. His Chait was done a couple months later and as an outpatient. We got very little instruction on that one and I was not very happy about it. Trial and error is just not how these things should go. I prefer the Mic Key in every way except for the fact that it has to be replaced so often. I like the once a year replacement with the Chait. Anyhow, to answer your questions……1) Yes. They say to rotate the button completely one time each day to keep the balloon from sticking to the skin. 2) Yes, but soooo much more so with the Chait than the Mic Key. 3) Yes. But we had some specialized bands made that have helped tremendously with that. Might be something you’d want to look into. We just called a local prosthetics and orthotics company and they sent someone out to take care of it. What he has is called an abdominal binder (a band that goes around his waist) with a strip of velcro on the inside. A doughnut was made that had velcro on the back of it and can be affixed inside to protect the button. Have a look on this blog a bit and you should see what I am talking about. We had a couple bands made and also a couple of different types of doughnuts. One doughnut is made of a material that they make pool toys out of. It can get wet and is easy to clean. He can shower or swim with it on if need be. We also had a doughnut made out of a very soft material. They are sooooo helpful and really ease our mind about keeping him safe and protected. Well Katie! ALL THE BEST TO YOU! Please come back by…..say hi….ask questions…..vent…..whatever you need…..anytime! I should answer a lot sooner in the future! GOD BLESS YOU AND YOUR PRECIOUS DAUGHTER!

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