This picture sums up what we have been doing lately. A cold brought on a sinus infection, perforated ear drum, and a respiratory infection. Snot and coughing and wheezing, oh my! Here's what we do on a sick day:
-6:30 am: Jaycee's oxygen saturation monitor has alarmed a few times in the past half hour for dips into the upper 80s. It's time for a breathing treatment. I do it with an inhaler while she's asleep and put her on her vest. She wakes up momentarily then settles in for the 20 minute airway clearance therapy. Her monitor shows improvement in her oxygen now, which is good. I then do her ear drops, antibiotic, oral steroid, advair inhaler, nasal spray, and motrin. I do the ritual bed check once Jaycee is up. It's wet which means I have to wash all the bed sheets and give Jaycee a shower.
-7:30: Jaycee is dressed now. I show her several options for breakfast. She picks chocolate yogurt but only eats a bite or two. I read my Bible while eating breakfast. Elijah is now awake. He does his morning routine and eats yogurt too. When they are both settled and quiet, I read them a chapter from Ezekiel for our daily reading.
-8:15-10:00: Jaycee is ready to start her day of doing as little as possible. She is wore out from her illness and is content to watch movie after movie. Elijah stays busy playing and checking in on Jaycee's movie. I do laundry, wash up medicine syringes, and other chores. I frequently check on Jaycee, looking for signs of change. I listen through the stethoscope or check her oxygen levels on the monitor. I see if she feels warm and take her temperature. Because she is nonverbal and has a high pain tolerance, if she lets me know something is wrong by crying, things are usually horribly bad by that point. So I know my checking could be perceived as neurotic, but it's a necessary evil when I'm trying to stay on top of Jaycee's illness to keep her out of the hospital. Depending on what the monitor or thermometer or my ears tell me, I can get myself worked up. I pray. It's not a very good prayer. It's more of a fear based prayer-Jesus, help her to get better and not go to the hospital- rather than a prayer full of scriptures or faith. I know my prayer isn't the greatest but it's all I can muster up right now.
-10:30: Jaycee gets a nebulizer treatment and another 20 minute vest session. She is mad that we are doing another vest. She pushes me away but allows me to put it on.
-11:30: It's lunch time! Elijah complains about what we're eating as usual. Jaycee, who is normally a big eater, doesn't touch her plate. I offer her a few more things. She indicates with signing that she'll eat soup. It's true; she ate it.
-1:00: Jaycee wants to lay down with me in my bed. She signs "mama bed." She lays down for awhile but doesn't sleep. Elijah bounces around the house and watches a cars movie. I enjoy this down time. I'm exhausted from playing the role of nurse. I'm well aware of the time left before the next treatment.
-2:30: Jaycee gets another round of my checks before getting another nebulizer treatment and 20 minute vest session. Shortly afterwards, I discover she has wet her bed. For the second time today, I'm washing all the bedding and showering her. I'm frustrated. I pray a simple prayer. Jesus, help me get through these illnesses. Let me have a good attitude while I'm cleaning up mess after mess because my attitude right now is awful.
-4:15: I start fixing dinner. While that's going on, I get her bi-pap filled with water and ready for the night. I get all the night medicines drawn and set out. I have to attempt to work at my job tomorrow, so I get all my stuff prepped for the next day too.
-5:15: With my husband home, we sit down to eat dinner. Jaycee doesn't want to come to the table at first. As soon as she sits down, she throws up in her dinner plate. Our family meal time won't happen tonight. My husband and I are tired and mentally drained but duty calls. Jason cleans up the mess on Jaycee. I take care of the mess in the kitchen. She's running a fever, so medicine is started. Another load of laundry is going again. Poor Elijah is eating dinner by himself. He seems content. I try to check in with him once in awhile so he doesn't feel neglected. By the time we are finished with Jaycee, Elijah is done eating and ready for his bath.
-6:00: Jason and I eat our warmed up meal, not that either one of us has an appetite now.
-6:30: Night medicines are given. It's time for another nebulizer and vest treatment. Jason and I squeeze our baths in and get in a few minutes of conversation.
-7:30: Jaycee is exhausted and ready for bed. We pray for her to have a good night of breathing. We hook her up to her oxygen saturation monitor. She alarms as soon as she falls asleep. I put her bi-pap on and her numbers go back up.
-8:00: Elijah is ready for bed. We say our bedtime prayers and go through some scriptures he has memorized. Tonight it's Psalm 150:6 and Genesis 1:1.
-10:30: I'm still awake because Jaycee is ready for her last breathing treatment and vest session of the day. I take her off her bi-pap briefly in order to do her inhaler and wrestle the vest on her while she's trying to sleep. She's done this before, so it goes smoothly.
-11:00: With everything done, I can now go to bed. I'm tired but the stress of the day makes it difficult for me to fall asleep quickly. I pray for peace, strength, and help. In a short time, I'm sleeping. My sleep will be interrupted periodically tonight from alarms. I'll sleepily walk to Jaycee's room and try to see why Jaycee's oxygen dipped down. I'll reposition her or the bi-pap mask. Fortunately, these things do the trick tonight and no oxygen or trip to the emergency room is needed.
My special purposed sick day has ended. I can only hope that tomorrow is better.
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