An Average Day

Being at home is awesome, but it is so much more work than being in the hospital. Kirk and I are not only parents, but we're nurses, pharmacy techs, cooks, and cleaning staff. Our average day goes something like this:

5:15-6:30 - Jaisal wakes up at some point during this interval.

6:30 - Administer half of morning meds.

7:30 - Administer immunosuppressants.

8:00 - Make breakfast; typically fail at attempting to get Jaisal to eat breakfast.

2 hours - Medical. If it is a liver clinic day, we are typically out of the house for 4 to 5 hours. Other appointments include getting labs drawn, ultrasounds, and physical therapy. If we have no appointments, I am usually scheduling follow up appointments, talking to doctors about concerns or lab results, or talking to some subsidiary of Walgreens about meds, respiratory equipment, or nutritional supplements.

11:30 - Jaisal's nap time, which typically lasts two hours. During this time, I get dressed, do some cleaning, eat lunch, and make lunch for Jaisal.

Afternoon - Administer medications, feed Jaisal lunch, playtime, bath time, and anything else we can squeeze in. I once again typically fail at getting Jaisal to eat, although with less frequency than breakfast. (If I were to offer Jaisal junk food, he'd eat all day. He's clearly inherited my bad habits and my love of potato chips.)

5:30 - 7:30 - Family time. Everyone's favorite part of the day! We try to sit down for dinner together as a family.

7:30 - Administer the last meds of the day, including the second dose of immunosuppressants within 15 minutes before or after this time.

8:00 - Bedtime. We try to get Jaisal asleep in our arms or close to it so that we can minimize his distress at putting on his bipap mask. These days he also gets very distressed when we have to use the nasal bulb to clear congestion from his nose. It is not a fun process and we can't wait until we can just put Jaisal to bed. He's always gone to bed so well, and I hate that we've made bedtime a stressful experience for him.

11:00 - 1:00 - Night feeding. We're still trying to get calories in the kid, so the nighttime feedings continue.

Up until a week ago we had a second feeding at 4 am, but Jaisal's been skipping it lately. Thank you little man!

We also wake up at least 3 or more times each night because the bipap or pulse ox machine is beeping, Jaisal's mask needs to be readjusted, or Jaisal wakes up and has to be lulled back to sleep because he can't self soothe while wearing the mask. We're really really thankful if we're able to get a 3 hour stretch of sleep on any night.

5 am - repeat, with caffeine!