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"Eat Faster, Son!"

"Eat Faster, Son!"

Nathaniel took two steps forward today. He spent most of the late afternoon and evening on room air. Hooray! We were able to increase his daytime feeds to two ounces given over a two hour period. Hooray! Hooray!

The doctor and I are ready to push that gas pedal to the floor.

The plan for tonight is to skip a vest percussion treatment and try a five hour overnight feed. At home, Nathaniel's feeding regiment includes a small breakfast, lunch and dinner g-tube feed timed immediately after respiratory treatments when secretions and coughing are minimal. He receives half his daily calories in a five hour overnight feed. Tonight we are going to give him half his normal nighttime amount. At any point, if his coughing or secretions require a lot of intervention, we will abandon the plan, take a step back, and start again slower. Nathaniel has required five liters of oxygen since he fell asleep. It is very normal when recuperating from an illness for him to need more oxygen support while sleeping.  (I like the sound of that. Recuperating. A huge step forward compared to Saturday.) The respiratory therapist will still administer his nebulized medications every four hours through the night, but typically we can feed him through breathing treatments.

If Nathaniel can tolerate this big jump up in feeds tonight and an even bigger jump up tomorrow on both day and night feeds, and if his oxygen requirement can be reduced while he is sleeping, there is a chance he could be discharged on Thursday. He'll let us know if he is ready. We can not go home until I can keep him hydrated through his g-tube, which requires secretions and coughing to be managed well, and he needs less than two liters of oxygen at any point.

We are getting there. Slowing. 

One of the tools we are using as we restart feeds is a Farrell Valve System and bag. It is additional tubing and an empty bag connected to his g-tube feeding system. It provides a channel for extra feed to travel for a time and then return to the stomach. I was told it is used most often for children who have a lot of gas during a feed as it provides a way for the stomach to relieve pressure. Using it with Nathaniel's feeds allows a path of least resistance when he coughs. Rather than vomiting with coughs, his formula can escape to the Farrell bag and then return to his stomach when his abdominal muscles relax. Genius! And stupid! I should have been told this existed a long time ago. It might have saved our family a lot of laundry from cleaning up vomit. It might have decreased Nathaniel's incidences of aspiration and pneumonia. It might have allowed me to keep him better hydrated during a respiratory illness and through coughing induced vomiting episodes. I am frustrated and pleased at the same time.

I am sleeping at the hospital tonight while Rich spends some time at home and (hopefully) gets a full night sleep. It is very strange to be in our home without Nathaniel there or his nurses working in the kitchen and his room. I do not like it. Sometimes I am tempted to turn on Nathaniel's machines just for the white noise they create. I sleep best when I hear their hum. It means all is well. Right now, I prefer the chaos of the hospital, the alarms from other rooms, the chatter of the nurses outside the sliding glass door, and the constant numbers blinking Nathaniel's vitals rather than the quiet of home without him.

Note: The blue shirt on Nathaniel in the photo is a Spio TLSO Vest. I will write about it someday.

 

 

Last Night in the Hospital?

Last Night in the Hospital?

The Week in PICU

The Week in PICU

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