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September Cincinnati Trip - Day 4

September Cincinnati Trip - Day 4

Emily and I switched shifts around three this morning (Thursday) and Nathaniel looked peaceful. He repositioned frequently through the night, but over all had a more restful sleep than he had on Wednesday. Which is good. Wednesday night was rough. Nathaniel was awake from 11:30 Wednesday night until 4:30 Thursday morning. He napped lightly in my arms through that time, if he slept at all. I assume it was due to discomfort and pain despite giving him as much pain medication as I could. I am relieved his Thursday night went better. Thank you Team Nathaniel for the supportive response to my Facebook post requesting prayer for sleep. God heard and answered.

Our job now is to settle into a routine for daily care giving and life-while-healing that provides twenty-four hour supervision for Nathaniel and times for sleeping, eating, and showers for Emily and me. Our general plan is that Emily will watch over Nathaniel the early part of each night and at nap time. These are the times he sleeps best and is most predictable or stable. She also helps me in the evenings for bath time, changing trach ties, and other evening medical routines. Emily is quickly become a fantastic trach nurse. She is starting to recognize when he needs suctioned and is able to provide the necessary care. She gives medications and can manage his g-tube feeds. She provides detailed explanations of his behaviors when we do shift change and has appropriately woken me with unusual or alarming concerns. I slept for five hours last night, which is probably the biggest compliment of my trust in her. I do not sleep when I do not trust the person caring for Nathaniel.

Except for a few hours in the late afternoon and early evening when we are both awake, Emily and I rotate sleeping and being with Nathaniel. With only two caregivers, there is not time for much other than sleep and care giving. I am with Nathaniel alone from about three in the morning until early afternoon. He has a tendency to be restless in the early morning hours even on feeling good days. Also his secretions are thicker and more difficult to deal with first thing in the morning.

After I finished the morning medical routine yesterday, I asked the hotel desk clerk for directions to the closest playground, "Just a quarter of a mile down the main road, turn into the golf course, and..." she said.  Nathaniel and I set off to find it so the room could stay quiet for Emily to sleep. Two and a quarter miles, one golf course, a lake, a a secluded trail, a paddling of ducks, and five Cincinnati size hills later, we turned around. The playground not found. Looking at an aerial of the area on my smart phone, I knew we were close. But Nathaniel's window before the next pain medicine dose was closing; we needed to head back.

The long walk was healing for me. Hospital days are hard. As much as I try to focus on the upbeat, positive, duck-filled moments of life with Nathaniel, there have been some difficult times this week. I watched him start to turn that funny color of blue in the recovery room from a mucus plug and had to assist two nurses in doing multiple rounds of saline drops, suctioning, and offering oxygen to resolve the issue. They knew trach care, but in Cincinnati, only I know Nathaniel. I woke at four Wednesday morning at the hospital to the same dry mucus-plug-is-forming whistle. Waking to a child headed into respiratory distress ruins any amount of sleep. Holding him snug, tears running down his face, as the anesthesiologist attaches gas to his trach to put him asleep for surgery requires a bit of callousness despite the fact that Nathaniel's tears break my heart. He rarely has tears for pain. Just fear.  Brushing those tears away, manually closing his eyes, kissing his forehead, and walking away from him asleep on an operating table will never feel normal. Regardless the number of times I do it. Giving off an attitude of confidence and peace for Nathaniel's sake is probably the hardest thing of all.

So being outdoors was nourishing, because abundant signs of life chases away the constant presence of eminent danger, the large machines, and the hospital sterile environment. Conquering hills felt good, because we have not been able to conquer aspiration yet. Pausing to catch my breath, only to have Nathaniel say, "GO," repeatedly on his talker, was a sweet reminder of our normal days. Intense medical days will slowly evolve into normal days again. That I know from experience.

September Cincinnati Trip - Day 8

September Cincinnati Trip - Day 8

September Cincinnati Trip - Day 1

September Cincinnati Trip - Day 1

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