Yesterday, I faced one of my biggest medical fears since having my wisdom teeth removed (and this time I had to do it sober): I learned to change Josie's Mic-Key button. You see, I'm no medical professional nor did I ever aspire to be one. And the notion of facing that gaping hole in her abdomen sends me running for the nearest commode! I had to leave the room when Josie got her first Mic-Key button. Lucky for Josie, her Daddy is a bit braver than I am. However, the Mic-Key button is a fact of life around here for the time being, and if it were to ever come out accidentally while I was alone with her, I would need to know how to put it back in.
Yesterday morning, during mirror time, Josie gave me a little pep talk...
Oh come on Mom! Be brave! You can do it!
See? You just lift my shirt up like this, deflate the old one, pull it out, pop the new one in the hole, and inflate it. Simple!
Seriously, Mom. Calm down. If Dad can do it, you can do it!
I don't know what she's so nervous about. It's just a little plastic button in my belly. For Pete's sake!
So, with Grammie Deb by my side for moral support (bless her heart), we headed off to Josie's appointment. I resisted the feelings of queasy lightheadedness that threatened to consume me and derail the process and I followed the nurse practitioner's patient guidance. Mic-Key Button 101 actually wasn't that bad! Granted, the recollection of the hole in her abdomen still makes my stomach churn, but I prefer not to think about that. Instead I am proud that Josie is the owner of a shiny new Mic-Key button. And I can happily add "Mic-Key Button Installation Engineer" to my resume.
At the end of our appointment, the nurse practitioner said "So now that you have learned how to change it, do you even need a follow up appointment for me to change it in 3 months?" and before he could finish his thought I said "YES I do! Just because I know how to change it doesn't mean I want to change it!" The past 11 months with Josie has made me feel like an honorary medical professional but that doesn't mean I'll be going back to school to earn my nursing license anytime soon. No sirree!
Speaking of Mic-Key buttons, I'm aggressively working to eliminate the need for that stupid button. Teaching Josie to eat orally has been a lesson in patience. She has made great progress but she's nowhere near where she needs to be to sustain herself without the feeding tube.
Upon learning that children with Down Syndrome benefit greatly from learning to use a straw, I purchased this nifty therapy cup called a Cip-Kup. The Cip-Kup makes straw drinking easier because it has a lip block to prevent tongue thrust and it has a valve at the bottom that allows the fluid to remain in the straw once suction is released so it requires less effort than a traditional straw. Like most of our great ideas, this was a recommendation from our favorite feeding tube graduate/oral feed mentor, Pudge!
Josie is also working on chowing down on baby food. She loves the vegetable risotto with cheese (thanks Mama Hop)! She's not so crazy about the fruits but there's nothing wrong with being a vegetable fan, is there Travis?! Ha!
We're always receptive to ideas that can help facilitate the transition from being a g tube eater to an oral eater. If anyone has a success story or would like to share a helpful tip, PLEASE email me or leave a comment!
Wow, Josie's getting so big!! What a beauty. Sorry, I actually got the queasy lightheadedness just reading this post. Yikes. Good for you, though!!ReplyDelete
Can you hear me cheering? Can you hear the whistles and whoops? Oh! You can't see it, but the squibs are doing the wave...Had I known, we would have painted bellies in your honor beforehand. Way to GO, SuperMom!!ReplyDelete
Great job on the button 101! Hoping Josie leaves it alone and you don't have to practice your new skills =).ReplyDelete
You are amazing...I'm not sure I would have been so brave! I also would have re-booked, totally agree, it's one of those things that's good to know but why do it unless absolutely necessary!ReplyDelete
I'm so jealous!!! Addy is given one button per year! Her doc says there's no reason to change it more often (I totally disagree btw)! It's disgusting! She got her new one yesterday, thank goodness, it was so yucky. Her balloon actually burst just moments before the button was changed. Probably cuz it was a year old! So glad you get a new one in three months! Good Job!ReplyDelete
I can't imagine doing that so Way To Go!!! Josie is doing great on the oral feeds too! Growing so big!ReplyDelete
@ Cammie - yes - the buttons should be changed at least every 3 months and I think your doctor is nuts!ReplyDelete
Sooner or later, there is a good chance a button will need to be replaced. The Skink pulled hers out a few times :) If that happens, you must get a button back in ASAP because in just an hour the hole can close to the point where surgery might be necessary to put it back in.
If the hole feels tight when you're pushing the button in... well... we used to use PAM cooking spray to make it slip in better - LOL! KY jelly works too.
So proud of you Elizabeth. Cheering and celebrating on your accomplishment!! We learn what we need to do when we need to do it and not a moment to soon. So adorable in her bows:0ReplyDelete
Glad you were able to conquer your fear of changing her button...but I am so with you on knowing how to perform medical tasks, but leaving it to a professional unless it's an emergency. I was taught how to do dressing changes on Emily's central line (a sterile procedure) but always requested it be done at one of our appointments until one day I had to change it because it literally fell off of her and I had no choice. It feels good to be prepared, but it feels even better letting the professional do it :-)ReplyDelete
We do have a success story - PTL!! Faith was 7 mos old when we adopted her, and had a g-tube when she came home. She was 3 years old when we got her OFF her g-tube. She was a stinker, wouldn't take a pacifier, wouldn't drink out of a cup, wouldn't eat . .. we finally had to get a Feeding Team involved. I can't remember how often our visits were, but maybe every 2 - 3 months? I think what got us on the road to successful oral feeds, was when we kept a log of how many bites Faith took, and kept increasing from meal to meal, day to day!!! It was HARD, but well worth it!ReplyDelete
Faith still has a tough time at meal times (sometimes). Her favorite foods are JUNK food! We still occasionally have to sing in between each bite . .. her favorite song is "Happy Bday" and we sing it to everybody we know . . .
Hope to hear about your success story someday soon! Keep up the good work! Your on your way to 100% oral feeds/drinks! : )