I realize we are just getting started helping our children and family as a whole unit live and succeed with chronic disease. We have definitely had more experiences in the hospital and at the doctors than an average family, but know there are other families that absolutely have had more experience than us. Watching each of our infants experience at some point an extended hospitalization left us feeling confused, afraid, lost, guilty, and often very angry. In the beginning I remember a toe to toe nose to nose discussion with one pulmonologist on call one day in the hospital with my 7 month old son (who heart breakingingly screamed bloody murder through every IV). The pulmonologist told me to “get used to this mom, you have to get used to this, you have children with a chronic disease you need to expect weeks in the hospital.” I was furious. I told her I refused to accept the hospital as normal and I refused to quit asking to go home as soon as we could as often as I could. She never came back to our room, and I never saw her again. She asked another pulmonologist to handle us (lets be honest me). I think I would like to let her know now that I apologize and I understand. I’m not happy about it, and it still feel angry about it a lot of the time but I understand that being intermittently hospitalized is part of my children’s life. We also understand that our emotions are second to helping our kids do their best to prevail with positivity and hope. Our attitude will be mirrored and magnified in them especially if it’s a negative one.

Sunday, November 1, 2015

Dialing It Up A Notch : How We Met Billy

 


I decided I would hate Orson’s g-tube or his “button” the night before Orson had his surgery in April. He was taking a bath and I just kept thinking over and over, “this is the last day he will have a normal stomach.”

But his resilience with the new addition to his stomach genuinely impressed us as parents. He willingly let us help him at night and we faithfully hooked him up every night (except Sunday’s when he gets a break from doing it).

Now 6 months later he still hasn’t gained any weight. A tremendous amount of work has gone into the button for no weight gain. I knew he had been fluctuating over the past 6 months but it was only between 34 and 35 pounds. We went to the CF clinic on October 20th and his 35 pounds was confirmed on their scale. Such a bummer. Then the next day we went to the pharmacy to pick up the antibiotic Orson got prescribed from the clinic visit. It was a liquid. I was so mad at myself for not remembering to ask for a pill form. Orson hates liquid medicine and I knew it would be a monster battle everyday for him to swallow it two times a day.

As I was about to loose my mind, I remembered that one of the things we were taught in Orson’s stay in the hospital with his surgery is that any liquid medicine Orson can take through his button! It took a little convincing but he let me do it!

Then the next Sunday we were practicing for the primary program and the “Jonah” verse from “Follow the Prophet” slapped me in the face. The verse says :

                Jonah was a prophet, tried to run away.

                But he later learned to listen and obey.

                When we really try, the Lord won’t let us fail:

                That’s what Jonah learned deep down inside the
 
                whale.

My decision to hate the button, and be resentful of it was not helping Orson. I wallowed in my hate and resentment for 6 months doing the minimal amount of work. My hatred had caused me to overlook that fact that I hadn’t really tried to make full use of the button and best utilize its potential for Orson. So now I am dialing it up a notch. Frank is very encouraging and helps all he can. We already have been blessed with ideas in regards of how to better utilize the button. Frank asked Orson if he had ever thought to name is button. Orson thought that was a great idea. Orson picked the name, Billy. So now instead of a piece of plastic we resent, we are talking to Billy all day long. Orson is totally into his button having a name and has created a personality and family for Billy Button. Currently Billy Button has one of his kids in the hospital, but don’t worry they will get out before Christmas – according to Orson of course. We go in again to clinic for an official weight check in December and we are excited and hopeful to see the fruits of our labors.   

   
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