Monday, April 8, 2013

Best Spring Break EVER!

Why this Spring Break is better than the ones I had 20 years ago or so ….

 I’ve done Spring Break. I don’t know if I’m on a girls-gone-crazy video somewhere from the nineties, I could be. I don’t remember anyone with a camera nearby, but it’s possible. I have gone to Cancun and Daytona Beach and Mardi Gras (that trip I went on with people from a restaurant where I worked while I was in college, and I didn’t even know all of their last names). Back in the day before children and marriages I went on skiing getaways and flew to London for New Years Eve.

Nothing, I mean nothing compares to this Spring Break.

Because today on Day One of my Spring Break 2013 (where we are partying it up with home repairs, gardening and organization…can I get a Yeehaw!) Adam, my soon to be 6 year old got his feeding tube removed. 

Yup, we found out today.  (Here’s the story… He was a pound at birth and 3 months early and had a trach for like a year and a half and numerous surgeries and issues and problems and feeding school and summer therapies and more, read and see all about it all in previous blog posts)

Recently he had a  tonsillectomy in Summer 2012. Prior to that, we had him down to getting one night time feed through his feeding tube (called a mic-key button). In August of 2012, we began our 6 month countdown of no tube feeds. We had to get him to take medicines by mouth and we went each month for weigh-ins.

Each month the doctors would say, “Great, keep going another month”.  January 2013 began a lack of weight gain and then in February, the doctor said that he needed to have some bloodwork to rule out reasons for his lack of weight gain. This was pretty disappointing to me and I viewed it as a setback and was angry and a bit discouraged. Bloodwork was all good and we continued to move along. March was the big appointment. This would be it. If he gained, then it was going to come out! 

Well, I didn’t go to this appointment, it was Philip and he actually missed the appointment. He went to the wrong office and by then it was too late, so it was rescheduled. I couldn’t be mad at him, Phil was mad at himself for the both of us and I love him. That brings us to today.

Philip took him. I know, you’d think I would go, but I am just tired of crying in doctors’ offices. It’s been a rocky journey these past six years and so, I just figured it would be better if I got disappointed in my own living room and cry later in the shower by myself.

Turns out my tub would remain tear free today. He gained a pound and is up in weight for the past few months, got through an illness and that was it. I thought this would be a major thing, like balloons and streamers and fireworks would come pouring on down through the drop ceiling. As it turns out, there is none of that and the doctor said to Phil, “Just take it out when you guys go home." We basically were told to clean the wound, cover it with gauze and a large bandaid.  He gets sponge baths for 3 days and then we will see what it looks like. We need to keep it covered and if it’s still open in a week, call the doc. If it stays open a month, he will stitch it.

Adam left the doctor’s office by giving the doctor a firm handshake and saying goodbye. When he came home, he talked to us about it, but was real nervous.  He kept on saying that he only wanted a new button, he didn’t want to get rid of the one that he had. This was understandable, I mean the kid has had this plastic thing in his stomach for 5 and a half years. He has no memory of being an infant and getting this surgerically inserted.

We talked about how he used to have a plastic thing in his neck, too for almost two years. We told him that his stomach will be smooth now and it will not get caught on things. We told him that now he can go down a slide belly down (feet first, of course). We talked about how now we can camp and sleep in a tent since before, feeding tubes and food in a tent and spillage would not be fun because it would attract animal critters. We talked about how he wouldn’t have to wear a swim shirt all summer and that he can roll in mud. We talked about how he can now start to wrestle as a sport. We talked about visiting family and being able to travel easier. 

The sleeping in a tent thing did it.

We gave him a choice, I said, “Adam we have to do two things, cut your nails and take your mic-key button out. Which one do you want to do first? “ He of course, chose his fingernails being cut. This “choice trick” is a popular one in our house. It made him feel like he owned this because he picked the order of operations and he didn’t cry. We showed him all the gauze, tubes and syringes. He was fine. 

The rest of the night, he’s been walking around holding his stomach, though. As if his stomach will fall off of him if he lets go.

Phil and I popped some champagne, took the kids to Rita’s and we are all kind of in shock. I mean, he's done. We did it. He started off life breathing on a ventilator weighing one pound with an 15% chance of survival and in September, he will be a first grader with no paperwork accompanying him to school.  I am online shopping for tents that sleep four so that the next break we get, we can camp.   

This is his footprint when he was 2 months old. 

This blog is done. Peace.

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