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"We are what we repeatedly do. Excellence, then, is not an act, but a habit." ~Aristotle

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Saturday, October 24, 2015

Even Less Sugar: Caregiving Day One: Homecoming

I am not complaining. All of the things worked out fine, and we are fine, and Ian is home. I just wanted to give you a glimpse.

Yesterday: Laundry. Making the hospital bed that's in the living room. Potty chair and wheel chairs are ready to go. Bath chair arrives (thanks, friend!).

Mom meets me at the rehab center to get Ian. This round, I'm giving two types of antibiotics at home. One requires 4 syringes (2 saline, 1 heprin, 1 med, which needs to be kept cold and removed from the fridge 30 minutes prior). The other requires a very slow push, so it uses a giant syringe and a motorized pump. I receive a demonstration before leaving the hospital.
Freedom60 Pump

At 1:30 p, the school calls: Ezra is having "difficult bathroom issues" and needs to be picked up. We wheel Ian and his walker to the car, and with some difficulty load him up. Then we head to the school and get Ezra, who is "uncomfortable" but well enough. We cram in and head home. The home health nurse calls to say she'll be at the house around 5p.

IV medicine is due at 4. It won't be delivered till 4:30p ... okay. There's wiggle room. We're supposed to wait for the nurse to arrive to do the first home dosage.

The meds show at 5p. Still okay. I unpack the refrigerated box and bag of boxes of bags and meds and supplies and organize them a bit.  I realize: no magic pump.

Maybe the nurse brings it with her? Since I haven't been "checked off" on using it?

I should have known better, based on last time: meds are one folks, care is another.

Nurse shows at 6p (we're now at 2 hrs past due): no pump.

She calls, they're "sending it out," which means we'll have it by 9p. She sticks around for the meds I CAN do, and we do some math:

The antibiotics are on an 8-hour schedule. They are now staggered, 3 hours apart, and both have started later than the schedule. This means we need to fuss with the dosing times, using that aforementioned wiggle room to get them lined up together and properly spaced. It looks like this: (C and V being the two types; remember that "V" uses the pump, and therefore takes 1.5 hrs to run, followed up by another 2 syringes -- saline and heprin)

6p  C
9p  V (I want to sleep now, but I have to wait 1.5 hr for the pump to be done and do the other 2 syringes. Also, the second home-health nurse is here.)
-potty break for Ian somewhere around midnight-
2a  C (yup, this is not a pleasant wake-up)
-somewhere here, in a haze, is another bathroom trip. I think.
5a  V (wow, it's amazing what a dope I am at this hour, after a few hours of semi-sleep on a squishy couch. I manage to start the pump and set my alarm, fall asleep, get back up and disconnect, go back to bed, start to fall asleep, only to realize I forgot the 2 follow-up syringes. Back to sleep at 7.)
11a C (nurse is here! just to be sure I've got this. And I do ... although this is the easy one)
12p V (like a boss. Is it bedtime yet?)
7p C/V (they're both together now! yay! but we're not done fussing yet ...)
3a C/V (yup, that sucks - I'll either need to go back to bed for an hour or stay up till 430 ...)
10a C/V
5p C/V
12p C/V
8a C/V (the golden hour! now we can go back to the schedule we had at the hospital, 8 4 and 12. Much more manageable).

It's not that any of the things are difficult, or particularly stressful (although being apprehensive about being 5 hours late on a dosage was getting there) -- I've gotten "over" my extreme paranoia about screwing up the sterilization and antibiotic administration -- it's that all of these things are swirling around in my brain. They are all things to be considered and done, and that's outside the slow, arduous trips to the bathroom, the pill regimen, meals, kids, general house-type things .... and starting this week, the cadre of therapists who will be calling (phone calls! blech!) to arrange -- and then showing up to do -- speech, occupational and physical therapy.

Okay: maybe I'm whining. Just a little.


  1. Rachel I'm praying for your family. Ian is in my prayers and God is taking very good care of Ian and you and the kids. I love you all. Prayers. Shelby

  2. Hope it settles into a rhythm soon -- those transitions are always so unsettling, getting the first meds etc. I'm so glad you have med folks coming to you ... you, Ian and the kids are on our hearts and in our prayers. Mar