Have you ever wondered what Ivey does all day? She keeps everyone one their toes that is one thing for sure. Her schedule (and I don't use the term loosely) is mundane and extremely strict; however, not one day is ever remotely the same. Our family is a 'fly-by-the-seat-of-our-pants-on-a-preplanned-trip'(everything is planned, but she never adheres to the plan). So, if you were to look at my computer, you would find a calendar strategically marked with appointments for Ivey, plans for the boys, events for Matt, times that friends will come over, and still, I am constantly scrambling at the last minute to make arrangements for everyone. It gets crazy over here.
So here is a glance at Ivey's strict, non-compromisable schedule:
*factor in alot of suctioning, replacing conformers and venting the Gtube
6 am meds (reglan/prevacid); canola oil; bolus feed
8 am trach meds (flovent/xopenex)
9 am brothers to school
10 am meds (reglan/phenobarbital); trach care; canola oil; bolus feed; nap
1 pm pick brothers up from school
2 pm meds (reglan); trach meds (xopenex); canola oil; bolus feed; nap (all children)
4 pm play with brothers
6 pm meds (reglan/prevacid); canola oil; bolus feed
8 pm trach meds (xopenex/flovent); get brothers to bed; bath; trach care
10 pm meds (reglan/phenobarb); canola oil; continual feed
2 am meds (reglan); trach meds (xopenex); canola oil
5:30 am end continual feed
(The canola oil is for calories to bring her up to her minimum daily caloric intake.)
No matter what goes on during the day, this schedule can not be strayed from....not for a moment. Ivey also does her physical therapy, speech therapy and playtime everyday. Oh, she also plays with her brothers. Don't forget that she goes to a doctor at least once a week (sometimes more) and she still sticks to her schedule.
Ivey also has FUN days like today. The boys were home from preschool - so - friends came over to play. At one point there were 2 adults, one 4 year old, two 3 year old, one 2 year old, two 18 month old and Ivey (8 months old) all here playing. That's a total of 7 children and 2 adults. It was crazy! Ivey has a wonderful, loving, full life!
9 comments:
Even though I know you must be on a schedule, I know it must be hard at times. I have a hard time with a simple prescription being remembered, let alone very important prescriptions several times a day. I admire what you do!
You have definitely found your "new normal". :-) Has the night nurse situation improved?
We're still praying for you daily.
I'm glad you explained the canola oil--I was wondering about that one!
And here's my question--are you getting ANY sleep?
Like Jennifer, I'm praying for you constantly:) I wish we lived closer--like, in the same state! It would be so fun to get our little ones together. I bet the boys would have so much fun! And Ivey and Addie would make quite a pair! I'd love to see them together in one picture!!
Oh my! You are one busy Mama!!!! I sure hope there is a nap for you in there somewhere. I don't think I could do it with out one.
I am still praying for you and little Ivey!
I'm so thankful that you all are in some sort of a groove now - out of the hospital real life! It sounds like she has a full and wonderful life!!
wow - busy little thing, isn't she? it's got to be hard to have things feel so rigid all the time. but you do what you have to do!
i too hope you are getting some sleep!
I came back to read this again, to make myself feel better about yesterday :)
And I bet you come to my post and read it to make yourself feel better about your days, don't you? We really are a pair, Gwen!!
Whoa. Getting everyone out the door by 9:00 is a huge undertaking for someone with three little ones, let alone with all you have to do with Ivey. When mine were little, a *loose* schedule was a life saver for me, and the kids really do better with it. Even though I like to plan, *I* am the one who chafes at *having* to do things according to strict times. I can totally feel for you, but I'm glad you let the boys have their full life and that you include Ivey in the fun!
PS-I didn't notice a nap in there for you...
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