Anyhow, at home we're preparing for Ellie's big annual meeting for home care services. We meet with the care manager for the Ohio Home Care Waiver... and with our nursing companies and hash out how Ellie's needs have changed and how her health status has progressed/regressed over the past year. To get ready for this, I always spend a good bit of time compiling notes and medication orders and lists of appointments/hospital stays/ER trips and all that jazz. We need all of this to determine her need for care moving forward. I was pleasantly surprised as I compiled all of this over the past week. Did you know that Ellie has only spent 13 nights in the hospital this year? That's drastically lower than her past years. And we've only made 15 trips to Dayton for additional appointments. I know that for most people, they never spend 13 nights in a hospital room EVER... (me included)... but for Bug, that's a heck of a year. Now, that doesn't mean that she wasn't sick or didn't have storms and seizures in our house... it doesn't mean that there were never days when she SHOULD have been in the hospital. Part of the reason this last year has been so good to her is that when we do have emergencies or pretty nasty illnesses at home, we're well supported and able to deal with them with the staff and equipment we have on hand. The fact that we have such competent people in our house everyday has much to do with our lessening need for ER trips and hospital stays. I'm hoping that part of it is that Ellie's immune system is starting to catch up with her and is starting to toughen to the things she'll be exposed to. I really hope this is a big part of her progress, too... especially since we're in the thick of cold and flu season and she's around other little kiddos every day. These last three years we've hunkered down at home with her... not even taking her to church during the winter months. Let's hope that she's getting stronger all the time and that she can tough through this season without too much difficulty. Anyhow - I thought you'd like to hear all that good news before we start to go into how things are going for her today.
So today, Friday Oct. 19th:
We packed bags for everyone last night and brought bags for the boys over to my parents' house. Buggy wasn't allowed to eat anything after her bedtime snack last night, but we pump her full of pedialite through the night to make sure they can set an IV today. (This is the beauty of a g tube and a feed pump). Ellie's notoriously a hard stick for IVs. Flooding her with pedialite before surgeries has been our life saver in getting her ready for this. One, a full belly of pedialyte makes her less crabby in the morning, and a well-hydrated baby is much easier to stick for the nurses. Win-win!
So we arrived at Children's early this morning, lugging around enough baggage for a family vacation, and Ellie went back for surgery around 10am. She was out of the OR after about an hour and a half. They went in and removed some of the tissue build up in her airway and removed her lingual tonsils. They did NOT need to do a tongue resection. Whew! She was slumped over sleeping when we met her up in TCU. She clearly has episodes of pain and normalcy. She watched Moana and Frozen, ate lunch & dinner and just polished off some ice cream. The only concern so far came from the dietitian... she said Ellie's BMI has dropped and she wants to ensure that we bulk up the calories so that she stays on a healthy BMI curve. Can I donate my extra weight?? Pick me, pick me. The dietitian probably wasn't impressed with my casual reaction to her concern... but really, if this is all I have to worry about post-op, then I think it's safe to take a nap.
We're supposed to do a capping trial tonight, but Ellie's oxygen saturation haven't been real pretty... so she's on supplemental oxygen... we'll see what they say. As far as moving toward decannulation, her surgeon said, "slow and steady wins the race here". Ellie's airway tends to collapse just above her stoma because the trachea puts pressure on it and weakens that tissue. She may need reconstructive interventions here again... but we'll have to wait and see. If her airway coninues to be too small after she heals from this surgery, we may have to wait until she gets bigger. We're not holding our breath. We're just thankful for a successful surgery and a happy baby.
Our boys are going on camping adventures tonight - yahoo! Until next time, friends... thank you for following along and for all the messages of prayers & encouragement today. Love y'all!!
After running around the pre-op room, we finally got her to sleep before she went back.
Not fully awake yet.
After lunch... standing up, throwing toys out of the crib with a mouthful of goldfish while watching movies.
This was Mookie yesterday after the Running Club awards. I think he wore both of his Running Club medals to school today.
When I picked Kaleb up from preschool on Wednesday, we took this random photo before having a short mommy & me date.
I love reading your post. God is so good at taking care of His children. Thank you for sharing. I'll be praying for little miss.
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