Sunday, May 15, 2016

My Mind Said To Give Up





You know how something new comes into your life and you are on high alert about it at first and then it gets comfortable and it just blends into the background? Well a year after Orson’s button that is what has happened. Or atleast we were comfortable with it until this past Thursday morning.


The story begins at 1:20am on Thursday morning when I am in Orson’s room detaching him from his Joey pump that just finished pumping 2 cans of “milkshake” into him. I unlocked the extension piece that connects him to the pump, took him off to the bathroom, and then he swallowed his pills and went back to sleep.

Orson's Mickey Button deflated
Pick up the story at 5:40am when Orson wakes up earlier than usual to go to the bathroom again. I help him get there and back to his bed and then lay back in my own bed until 6:15 when Ruby wakes up. Orson and Charles have ambled downstairs and Orson is getting ready to set up for his gauntlet of treatments when he feels that something is not right. He screams to Charles that “MY BUTTON IS OUT, MY BUTTON IS OUT! GO GET MOM!” And then turns into a statue on the couch because he is afraid to move, sure that all kinds of terrible things will fall out if he moves around.

Shredded Button Balloon
Charles tells me what’s up and I go into complete emergency panic mode. If Orson’s g-tube (his button as we call it) is out for more than an hour the hole closes up enough to require surgery again to put it back in. So since we have no clue when it fell out I am freaking out. Cue the hand shakes and nausea.

First thing I get another button kit and go to try to put a new one back in. It doesn’t work. I try 5 more times while simultaneously rapid dialing Frank over and over. Because even though he is at work already I want him to talk me through it. The button is made of plasticy rubber and as I am following the tried and true steps to get it back in Orson’s gut it keeps bending in on itself, what I assume is a tell tale sign that the button fell out hours ago and the hole has closed long ago.

Orson cries because he knows that this means he will have to have surgery again. I start to pace. Charles who knows that surgery means Orson will be gone for a few days, cries out “I am going to miss him so much.” I get a hold of Frank who has at that point received my texts and seen my calls and is also distraught.  

I have tried so many times and Orson is so upset already from my jabbing him in the stomach in a partially closed wound that my mind said give up. “It’s too late, there is no chance. All is lost.” I continue pacing around the house. I am upset and thinking about last year’s surgery and dreading having to do it all again. When the thought enters my mind to call Orson’s surgeons office and get into the emergency on call provider I push it aside thinking again its too late and would be a waste of time. The thought comes again. This time I listen and call. I get through to a woman who says I will be called back by the on call provider very soon.

Orson is still laying on the couch afraid to move. I look at the button site and am shocked at how perfect and closed that it looks, my mind jumping to the day in who knows how many years when he will get to take out the button and keep it out and also knowing that today is not that day and what lies ahead.

I get a call on my phone from the on call provider. A woman who is calm and kind (and who has either a dog with a funny sounding howl, or a baby she is trying to juggle while she makes this call). I explain to her that I haven’t seen his button in him since 1:20am that morning and have no idea when it came out. By then Charles had found the button on his bedroom floor with the balloon completely blown out of the bottom. The woman on the phone asks if I have the old button, asks if it will hold water, asks if I have tried to put a new one in. Yes, no, yes. Then she asks if I have tried putting a Foley in. She said that the tip of it is stiffer than the tip of the button and I may be able to get it in to “save the hole,” that the button needs to get back into.  

I always carry the Foley with me as instructed by the surgeon. I run get it out of my bag and rip it open, pretty clueless as to how to use it since I never have.

Then the rest of the story can be compared to the scene in a movie when the least likely person in the back of the plane is pulled out of the back to do an emergency landing as directed by someone from a radio tower far away.

At the same moment that I am still sure that the hole is closed I am following her implicit instructions on speaker phone while the woman is both encouraging a sobbing Orson and directing me with calm clear directions. I am pushing with slow even pressure as the caller is telling me to and to my absolute amazement it gives way. Orson is screaming so I am still terrified I am hurting him and making the problem worse, but the woman on the phone from the surgeons office continues to encourage me and direct me. I finally get the Foley in far enough, fill the balloon with water and continue to completely doubt I have done it right. My new hero gives me steps to take to check to see if it is in correctly and as I follow them it appears to be just fine. She tells me how to tape him up and recommends leaving the Foley in for a day to stretch the site and then the regular (new from the package of course) Mickey Button should go back in the next day. All of it came to pass.

Once I got the Foley in, Orson had no more pain from the incident. The next morning the new button did fit. We are grateful that at this time Orson does not have to go back in for more surgery. We learned some new things, essential things, about the care of his button. But all things considered I learned most of all to listen to the prompting of the Spirit of God because on my own I had no hope of getting the button back in, but I was wrong and I received comfort, hope and direction through the Spirit of God.




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