Wednesday, July 9, 2008

Best Laid Plans



Before I start, I think I better explain the pictures. Especially the first. Picture number one ..... Zoey's Mickey Button, aka, g-tube. Picture number two ..... if you are going to put your babies belly, in all it's glory,for the entire world to see, you best follow it with another, one showing her darling face and sweet smile. Now, the reason for the pictures. The day was supposed to, with suppose being the operative word, be our day at the beach. The California coastline and the unpredictable marine layer had alternative plans. Overcast. Extremely overcast. The boys were slightly disappointed but handled it well. Better than I expected. Seeing that it is not exactly easy to explain barometric pressure and the such when I barely understand it myself. We moved on quickly from the initial disappointment and I was able to appease them with a day at our good friend Michelle's pool. My day was all set to go. Lunch's and bags were packed already for what was supposed, again suppose, to be beach day. Pool day was going to be just as good. It turned out to be great. It was the getting there that was, well, less then great. Just as we were about to walk out he door I notice Zoey had a big wet spot soaked all the way through her onesie. Oh, boy. She had been hanging out on the carpet just rolling around and there was no other explanation except that it had come from her g-tube. On Marks birthday we had had a similar incident. I refilled the balloon and knew if it happened again, then it was time to switch out the entire button. You can click on Mickey button to learn more about it if you want but here's the long and short of it. This button goes directly into Zoey's tummy and supplies her with her nutrition and any medication she needs. It is held in place with a silicone balloon that you inflate with water. As time goes by, usually 5 months for Zoey, it begins to break down and needs to be replaced. Here's where I come in. Not my favorite thing to do. It ranks right up there with giving my daughter 2 ACTH shots a day, for 7 weeks in her little thighs. But I do it. Because I have to. Changing the button is a process. First of all, an empty tummy helps. Doing it with a full one does not bode well, for obvious reasons. When a g-tube is removed, there is just a hole, or stoma as it's called, right straight into the stomach. Therefore, empty is good. It's not really time consuming but I usually have to do a little mental preparing as well as the physical prep. Lay out the "stuff". Make sure things are close at hand. Try and distract little Miss Houdini or Lady Octopus as I call her lately. Then there's the mental end of it. Mainly I am always afraid I might hurt her. I know I won't. I just worry I will. I give her a little talk. Tell her I'm sorry. Say I hate doing it but a Momma's got to do what a Momma's got to do. I begin the deal and right as I have begun, no turning back, little men fly into the room screaming for a referee for their lego dispute. Try to ask, more like "forcefully request", they leave immediately or, or,or.....something bad is going to happen. I couldn't think of a threat quick enough. Direct my attention back to the "wiggle worm" and fast as I can, swap things out. Not before spilling the entire water bottle I had precariously placed,opened ,on my bed. I only needed 5cc, a minuscule amount, Lord knows why I had the entire bottle. Zoey begins to cry as the cold water soaks directly underneath her practically naked little body. Swoop her up, dry her off, tell her again I am sorry and move on. Dressed her, checked out my handy work to see if it looks alright. It does. Give it a couple days and it won't be the case. It ALWAYS becomes red, inflamed and yucky after I swap it out. Hate that part of it too. But what can we do. She has it. She needs it. It stays. So after a minor delay we headed to the pool. Enjoyed some sun. The boys forgot about the beach and swam like crazy. Tuckered them out and passed out by 7:30. That was the day in a nut shell. A couple little extra, unexpected twists. Mostly minor. All fixable.Best laid plans sometimes have plans of there own.If the last year has taught me anything, it is just to go with what ever you get regardless of your already established plans.Plans are just that,plans. With life on it's own agenda. Hope I didn't make anyone queasy as they checked in on us this morning, possibly coffee and breakfast at hand. Some might even have found it interesting, as I certainly had no idea about g-tube's before Zoey came into our lives. Now, well, the number of thing I have become versed in, is beyond all comprehension. Sometimes I can't even believe the things that at one time would have absolutely seemed foreign, now are common place. In fact, there have been a number of occasions when I have been asked if I had a medical background. My answer, yes, just not in the way they are thinking. Zoey continues to take it all in stride. She is a little fussy today. Teeth remain the culprit. Count so far of teeth: 2 on bottom all the way up. 2 on top through the gums. Two on other sides of top, trying to find their way out. 12 month molars,major bumps on gums! Who could blame her for being cranky. We ordered her Theratog today. This is going to really help with her tone and core muscle strengthening. I also bought her a really cool carrier called an Ergo . I have tried the Baby Bjorn and the Moby and neither one have been comfortable for either of us. This is new and looks like it will be great. A friend of mine raved about it. Tomorrow we intend to try it.I think we may undertake the zoo. That's all I've got for now. Thank you as always for stopping in, checking on us and for those who I managed to have once again kept your attention until the end of the post, I truly appreciate it. And always, thank you for your prayers.

4 comments:

rae said...

OMG her stoma looks great! Just wait until she rips it out and thinks it is funny.... ahhhh good times. Right now Sean is very interested in Sam's button. Can't boys just leave their little things alone...LOL
hugs
rae

Melanie said...

I think they would be perfect together!! :) I am glad you are enjoying our blog...I will be checking in on Zoey often!

Forever Greatful to be a Wife and Mommie said...

ya, I'm not a fan of the g or GJ in Gavi's case either. He has a PEG, not a button but still the same basic concept. Thankfully becasue it's a J tube we go to the hosptial to have it put back in but never the less it sends chills down my spine.

Shannon @ Gabi's World said...

I ran across your blog by seeing you on another blog, and I had to come by to visit! Your daughter is beautiful! You really sound like you are doing a wonderful job with her care!

As a nurse I can tell you, her Mic-key looks awesome! As a mom of a girl with Down syndrome, I can tell you that you will love her even more as the years pass. Doesn't seem possible does it? I know you love her so much now, but you'll see... it becomes more and more in each passing year!