**insert all inappropriate cuss words I'd normally spew here.**
What the frick frack is the answer here? Plug the leak. Too much volume, she pukes. Change the volume, she doesn't put on weight? No matter what, she has more gas bubbles than one person should - despite using gas med's (symethicon). A GJ, NJ and NG tube are not an option for us. Andi is too quick, too grabby, and is too hell-bent on yanking stuff out...she always has been. I think we need to add polycose back in, keep the volume reduced - and feed her overnight, in addition to starting the ween off the g-tube. It doesn't work right. She likes to eat. She drinks with glee from a cup. The formula just isn't cutting it. As her Dr. said yesterday, this feeding method just isn't working. Again, the other options on the table (GJ, NJ, NG) are going to get a big ol' firm 'Hell No!' What the answer will be... I have no idea.
Andi had the best time in Alabama. She spent a majority of her time soaking in the open door fresh air, warm weather, looking outside at the big ol' tree, and receiving visitors galore. She did get attacked by the green snot monster, which totally sucks. Luckily, we still have a nasal aspirator machine that sucks the monster right out of her nose. However, in Alabama, we got to use the good ol' bulb-syringe, and found that to be rather disgusting. Nothing like getting up close and personal with the green snot monster. Ewh. Great way to share the cold too. While Daddy Bean and I were getting sun burnt on the beach in Sandestin, FL...Andi Bean decided to spice things up. Upon departing for our trip, leaving Andi overnight (four nights) for the first time, I reminded Ginga. "If by some small chance that she pulls out her g-tube, there's a lubricant in the back pocket of her backpack. Fill the hole with the lubricant, and take her to the ER." (I figured she didn't want the ol' demonstration of g-tube placing that I've seen about ten times now.) Never did I expect that the ol' popping of the g-tube would happen while we were on our vacation, but... when you least expect things to happen, that's when life slaps you upside the head and reminds you that you don't know diddley squat. Luckily, when it happened to Ginga, she wasn't alone. She kept a calm head, remembered my instructions, and with the help of Aunt Deb... they made it to the hospital within minutes. Ginga told security to step aside, as all good grandma's would -- and with the baby in her arms, was ushered into a room immediately, while others had to wait. The lesson everyone in health care should know, 'don't mess with Ginga!' :0) They replaced the g-tube and checked placement with some sort of machine. Sadly, the Dr. scared her further and said that she had only an hour to get the tube in, and had it been too long - he continued, they'd have to life-flight the baby to Birmingham and taken into surgery. I just about fell off my chair when I heard that one. What an a-hole! Further scarring a woman who has probably just had the worst scare of her life. I've been told it'd take 5-6 hours to close, and because Andi's had hers so long, she'll probably require some help to get hers to close. That knowledge makes what that man said totally unnecessary. Luckily though, everything worked out okay and know we're very lucky. However, Daddy Bean and I feel like we need to send Ginga and Aunt Deb to a day spa with oodles and oodles of champagne, to help them recover from the horrid experience. I've been there, know the feeling, experienced the smell, witnessed the 'ewh!' ... all while a little siren rolls around the noggin - chanting the threat of another surgery! It's the worst feeling in the world. I feel lucky that it happened where and when it did. I can't imagine her trying to deal with it alone! But, I'll have it be known that this instance is one time that our medical binder really served us well. I've documented our med's, surgeries, weight & growth charts, insurance information, her medical record number, her Dr's name and pager, even her medical number at OHSU. It's really something that came in handy, especially with me not being there to regurgitate the last ten months of extreme living.
In any case, we've said goodbye to our sandals, shorts and are enjoying (that's PURE sarcasm) the crisp 38 degree April morning air. Seriously, the need for Prozac might be upon us. Especially depending on how our appointment today goes. Our break was seemingly even more brief given the latest report.
Hi, I found your blog from another CHARGE blog. My daughter is 8 months old with CHARGE. Just wanted to tell you how ADORABLE your daughter is and I hope everything goes well!!!
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