Trying to get in a routine

So, we've been attempting to get into a routine at home, as I'm sure most of you are with your own kids going back to school.  We are having much more success with Lily's routine than Becca's.  When we have a day that we don't have to go to Children's, it's much easier.  Ethan and I have decided to run Becca's 12-hour IV fluids during the day, rather than at night, so that she is able to sleep.  This has worked so much better, although it limits what she can do during the day.  She tried to ride her bike this morning to no avail...

On a perfectly routine weekday, here's the plan for Becca's day:

  • Trisha wakes up and removes Becca's IV fluids from the refrigerator so they have a few hours to warm up to room temperature before hooking her up
  • Ethan or Trisha begin getting Becca's five morning oral meds ready between 7:30 and 8:00 (they require crushing a pill to mix with chocolate syrup, emptying capsules into a small amount of Danimals, and drawing up these and the rest in a variety of sizes of syringes)
  • Ethan attempts to get Becca's oral meds in her mouth and down her throat by threatening, bribing, or whatever works while simultaneously trying to get her to eat (so that she doesn't take her meds on an empty stomach and vomit) and putting together and priming tubing, IV fluids, and pumps  
  • Becca is hooked to her Cipro in one lumen of her central line and her IV fluids in the other one after Ethan flushes both lines
  • Ethan continues to fight Becca's stalling of taking her oral meds, sometimes threatening to take her to the hospital if she can't take them orally
  • He moves her bedside commode down to the family room so that she doesn't have to walk all the way to the bathroom every 10-15 minutes with her two pumps and IV fluids when she needs to go
  • After an hour, the Cipro pump alarm goes off, and Ethan unhooks that line and flushes and caps it
  • Ethan and Becca spend some time together playing games, doing puzzles, reading, snacking, etc.
  • Six hours after Becca takes the oral meds, Ethan starts over trying to get her to take more, and she usually stalls again, telling Ethan that she'll take them when I come home.  The problem with this is that it throws off the nighttime meds that are supposed to be taken six hours later.  It usually ends up with us having to wake her up to take them, which is NEVER good.
  • We have some time with all four of us at home, eating dinner, playing, doing homework, etc.
  •  Around 8 or 8:30, Becca needs to be hooked up to Cipro again (for an hour), so prepping the tubing and pump starts at about 7:45.  Every other evening, she needs Micafungin, which also runs through one of her lumens, so she needs to be hooked up an hour earlier to get them both in before bedtime.  Otherwise, she's awakened when we unhook and flush her lines or from having to go to the bathroom so often.
  • We all head upstairs, Ethan bringing the bedside commode (and cleaning it out), while I get the girls ready for bed.  Ethan usually begins reading with Lily, and I read with Becca.  I typically fall asleep with Becca first, then Ethan wakes me up so that I can lie down with Lily (and fall asleep with her).
  • Nighttime oral meds are prepared by Ethan (or me, if I miraculously don't fall asleep), and we attempt to get them in Becca while unhooking her fluids and Cipro/Micafungin and flushing her lines.  At this point, it is usually after 10pm.  
Granted, Becca is going to the hospital in Clifton two or three times a week, so imagine how that throws off this routine.  Also, think about trying to drive the thirty minutes to and from the hospital with Becca hooked up to fluids and needing to "go" every 10-15 minutes.  She will not even discuss trying to wear a pull-up, as she insists, "I'm NOT a baby."  Becca splits her "seat" time in the man-van between her booster seat and the portable pink toddler potty, and though it may not be legal, when you've gotta go, you've gotta go.  

Dressing changes and home care visits throw this schedule out the window, as well as Becca sleeping late or refusing to take her oral medications.  Finally, Becca screaming in pain and vomiting up all of her nighttime meds (as happened just a little while ago) kind of gets us off track.  At least she's not waking up every 20 minutes to use the bathroom at night now... that was simply dreadful!  We are all sleeping much better lately, and she is so much happier at home.  It's amazing what being in your own home with your family can do for healing your mind and body!  Her BK virus is clearing up a little, too, so some medications have been pulled, including most of her pain meds.  The whites of Becca's eyes are white again, and most of the dark bruising on her face has gone away.  She kind of has a gray tinge to her, though.  Her weight is also slowly going down, since the VOD has virtually disappeared.  The doctors are happy with her numbers, including some indicators that her body is starting to make its own red blood cells (the slowest counts to come in on their own after a bone marrow transplant).  Her hemoglobin was really low on Thursday, and we thought they were going to give her some packed red blood cells before the weekend, but Dr. Grimley wanted to wait to see what her body does over the weekend.  She's going to the clinic at 7:30 tomorrow morning, so we'll see what they say.  We're crossing our fingers that her hemoglobin went up on its own.

Becca's just starting to miss playing with other kids a LOT this week.  I think it's because Lily is continuing to play with others, whether at school or at their houses, and Becca feels left out.  Ethan plans to check with the doctor tomorrow morning to see if she is allowed to have a very healthy friend over to play sometime.  We walked over to our neighbors' last night, as they invited Lily over to roast marshmallows in their backyard firepit.  Becca felt quarantined (and rightly so!), so the brief time away from the house seeing other kids and people was good for her spirits.  She received a makeup kit on Friday and was looking in the lipstick compact when she sadly noted that she doesn't have any eyelashes or eyebrows.  I forgot that she hadn't really seen herself up close for a long time.  I explained to her that the chemo took them when it took her hair.  Becca was pretty miffed that I hadn't told her, but I reminded her that they will grow back, just like her hair.  She replied, crying, "But not quickly!"        

Thank goodness Lily doesn't want to participate in any sports or extracurricular activities right now!  I don't know how we would do it.  We're having enough trouble just getting her to want to do her homework.  She surely takes after her daddy in that respect, although Lily absolutely loves school and her teacher (just like me).  

We really appreciate all of the continued thoughts and prayers... PLEASE keep them coming!  They are what is helping us get through this.  TK

1 comment:

Timmiera said...

Wow! Thanks for the update. Made me tired reading this. I love that you have still kept your sense of humor throughout though! Always in my thoughts....
Love and Light,