This morning Ivey underwent another procedure. The GI doctor placed a PEG tube into the wall of her stomach. Now instead of having a ng tube (feeding tube) run through her nose into her stomach, her feedings will be supplied through the PEG tube directly into her stomach. After six months of tape on Ivey's face holding a feeding tube in place, she is FREE! No more tape, no more tubes, no more irritated skin, and one less object in her sweet face. This morning I watched her hook her right index finger under the tube and pull it out for the last time! Yeah. I just sat back, watching, and said, "Ivey, you get to do the honors."
She is sleeping now. Our nurse, Hannah, assures me she will not wake up happy, nor will she be for the next three days. On the bright side, we hope to have simplified Ivey's feedings.
Have you ever felt like your life were a TV script. If we had to choose one right this very moment it would be Gilligan's Island.
We have just been stranded on what we thought was just a three hour tour.....
Our, "Oh, typically cleft lip repairs require a one night stay, in Ivey's case maybe two" just extended itself. (I planned for three, to no avail.) How long? Not sure. I can tell you that Ivey's case manager here at Scottish Rite just left the room with the words Thanksgiving, no, home, during holidays, training, sleep-ins, and weeks. You can rearrange the words however you like. So time to decide, which cast away will I be? Considering I have one pair of jeans and three pairs of sweat pants packed, we can definitely rule out Ginger. You would never catch me in a pair of cut-offs and a shirt tied above my waist these days, nix Mary Ann. And at the exponential growth of our hospital bills, cancel out Lovey. To my despair the rest are men. Looks like the Sirmans' family is about to rewrite the script......
Just keep a look out for S.O.S signals
Signed,
The Castaways
Confessions from the mind of this sleep deprived mom navigating the world of complex medical needs, deafblindness, and special education. And y'all, it may not always be pretty, but it's real, and it's always for the love of Ivey.
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9 comments:
I really wished that I lived closer so that I could be there to help or at least to talk to you. I am sure it can be really awful at times. I am glad to hear that she no longer has the feeding tube in her nose. I am sure this will be great after the inital pain wears off. No matter what, I know that you will have much to be thankful for this Thanksgiving holiday.
Gwen- I love your humor in the midst of the continuing "suprises." Glad she is rid of that feeding tube so the world can see her beautiful little face!
What else can folks around here do to show some more practical love to you & yours? We're ready & willing!
Give tons of hugs and kisses to Knox and Walker whenever you see them. Tell everyone that I miss them.
Gwen, I'm so glad to see that you have a sense of humor about this:)
Caiden and I pray for sweet Ivey every night before bed; I'm praying that the next three days aren't as bad as the nurse says, and that you'll be home sooner than they're saying!! If I were closer, I'd come keep you company in the TICU:)
We are so glad to hear that the feeding tube has been moved. Your beautiful face will shine even more.
Gwen, it sounds like I need to plan a road trip one Saturday or Sunday. I would be happy to come and sit with you for a few hours.
Sending all of my love,
Mon
Very cute! I am a good friend of Sarah's, and I have stopped by to read several times. Before children, I worked as an RN in a pediatric hospital with patients like your daughter. I remember. . . Know that you all are in my heart and in my prayers. May God bless your family in unique and special ways (that only He can do) during this holiday season. Take care.
No tape! Yea! I bet she looks like a new woman! Let's see. Will it be the professor, Gilligan, Skipper or Mr. Howell? My vote is for the Skipper. He always had a good attitude and someone to boss around. Minus his "figure," he'll just have to do until we can do something about the clothes situation!
I am praying that precious Ivey will surprise the hospital with how well and quickly she heals. And that your stay is much shorter than anticipated. But regaurdless, I am also praying for peace, and much needed support.
I sure wish I could give sweet Ivey a hug..... even though I've never met her she has a special place in my heart!
May God bless your whole family right now with all your needs.
I found your blog today and your story is so inspiring. I live in Atlanta and if you ever need anything while you are at the hospital or back and forth to appointments, please let me know (whitwall77@hotmail.com). I will be praying for little Ivey and her recovery.
Best Regards,
Whitney
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