Monday, December 20, 2010

I was waiting...!

Well, it finally happened. The moment I had dreaded. There always has to be a first, right?

Yesterday, after church, I was changing Evan and getting him ready for a nap. Evan was standing next to me, naked and I saw something dribble on the ground out of the corner of my eye. I thought he had spit some food out of his mouth. When I looked up, I saw more food goo on his belly and much to my surprise, his Gtube button dangling from medical tape!!!

I'm not exactly sure what happen but I'm assuming he pulled on it a little too hard. All at once I was in a slight panic. It is very strange to see a hole in your child's gut, even if it is only about a centimeter wide.

I sent one child to call their Dad, he was still at church. One child to get the emergency kit. One child to hold his arms down, the other the legs. Then began the replay in my mind of all the information they give you in the hospital for situations just like this. You see, the 'button' is held in place by a small water balloon that holds about 1tsp of water. Over time balloon can deflate (which is what was the case for us) and it is flexible so depending on the activity level of your child or even the curiosity of other children, they are bound to come out.

The nurses try to prepare you to handle the situation. We watched videos, had someone come and give us a more hands on training, etc. But it is a lot of information, and many times I was flabbergasted thinking I didn't have to have any medical training to do the things they are telling me needs to be done.
We keep an emergency kit with us at all times. Time is of the essence. Because the stomach is a muscle, the hole can close in there within 10 minutes.

I was not able to get the tube back in. I tried and tried and it seemed just ever so slightly too big. I really wasn't wanting to go to the ER. Of course, as life would have it, in the middle of this chaos his alarm for his cornstarch treatment sounded- queue more panic!

In the emergency kit there are some catheters of varying size that are used to hold the hole open while we seek medical attention in the event the button can't be replaced. I decided that like or not this is what I'm going to have to resort to.

Luckily, my knight in shining armor came home. He was little less affected by the drama and was able to get the button in with a little more patience and pressure than I was. Crisis averted. I fumbled through refilling the balloon, and got him taped back up, with extra tape of course. And then prayed we'd done it right.

All I can say now is WHEW! I never want to do that again but I know this wont be the last time. This experience will make it a lot easier for the times when I have to change it even just for  wear and tear.

Thursday, December 16, 2010

I remember when I first learned that my sweetie pie had to avoid sugar that I was heart broken that he wouldn't be able to have a cake for his first birthday. It became so important for me to find a way to give him that same experience of smashing a cake and having fun making whatever mess he could. I also wanted to find a way that in later years he wouldn't notice the difference of everyone else getting fun cakes.
Here is what I came up with:


I bought a sugar free Jell-o cup. (it had to be Jell-o, the other sugar free brand was still made with fruit juice- hidden sugar!!!) Lined it with a cupcake liner. I topped it with sugar free/ lactose free Cool Whip. Sprinkles. And voila! my own impostor cupcake, mess and all!


I'm guessing he loved it!

I was excited a few weeks ago to find a sugar free cake mix by Pillsbury. I'm planning on making Evan some cookies with it for Christmas. I'm hoping it works out. I find that sugar free things don't always turn out the same way. It will be fabulous though to have a real birthday cake for him next year and another easy way to prepare a treat for him when it is needed. Pillsbury also has a sugar free frosting as well but it still contained Sorbitol which is on his "can't-have" list.

I'll let ya know how they taste!

Wednesday, December 15, 2010

An Emotional Outburst

I was searching through pictures today at the request of some family and friends. We haven't had a family picture in over a year, mostly because of chaos and some part due to my insecurities. This one immediately brought me to tears, not because of its tenderness but because of the look on my sweetie-pie's face.
It was a busy day. I'm trying to remember if I gave in to his constant need for food or if I tucked him in the stroller and begged him to sleep just a little longer, not knowing how dangerous it was. I had no idea at the time of this picture how desperate his situation was. The look on his face breaks my heart.
This disease can be so deceiving. If you saw my sweetie pie today you would see him running around like any other 16 month old. He's into everything, loves to dance and play with his sisters, and seems as healthy as the next kid. Many people compliment us on how well he looks asking if we are so happy that he is better now. And yes we are so happy and he is doing well. But, most people don't realize it is a daily battle to keep him that way. Its constant guilt and worry over missing an alarm or getting sidetracked on the way to prepare his cornstarch treatment. Its wondering everywhere you go if this is the day he's going to catch a stomach virus that will land him in the hospital. And after all of our best efforts there is still no guarantee that he wont have organ damage or any other complication that comes along with this disease.
I try really hard to be positive and proactive about this all. I read anything I can get my hands on and have recently endeavored to learn all I can about metabolism. Lately, though Ive been feeling quite depressed and overwhelmed.

At our last visit to the Metabolics Dept. It was frustrating as usual. I spend hours there defending choices that I make, trying to understand what they want me to do and just plain get a handle on everything. I leave confused, frustrated, and practically in tears. The cherry on top was when I was told that "I may have to make a choice. Evan being overweight or him developing liver cancer or needing a transplant" As if there is a choice in any of this!!! I don't know why but this just infuriated me. Mostly because I know its not really true anymore with proper treatment, that there is a doctor who is reversing liver damage in some of his patients and my doctors are too prideful to make the call and take his advice. So I have to continue to sit by until August and allow what ever to happen to him while we wait for our appointment in Florida. I can't stand sitting there listen to doctors who may mean well but forget what disease they are treating while talking to me or fumbling through an appointment seeming as if they may or may not understand what they should be looking for.

Another thing that has been weighing on me lately is his future. A friend of mine has recently sent her son out on a mission for our church. It is a long look forward to right of passage for our religion, and opportunity to grow and serve the Lord. A dream that I have for my own son. But in contemplating this I have realized this may not be possible for my sweetie pie. This and some other more private and delicate impressions that I have had, that I can not even bring myself to speak and just added to the heaviness on my soul.

I feel like this post is turning into a pity party, complaining session, that is not what I really want it to be. I just needed to get some anger and fear and pain out. I hope that some other mom will maybe just even get some validation from I'm saying. This is so hard, but not too hard. I have many things to be thankful for with all that has occurred and how well he truly is doing. He amazes me and is a bright shining star in my life. And if I can hold on to those positive things, I CAN DO HARD THINGS.
So I guess that is enough of my little meltdown. Ive got chubby cheeks to kiss.....