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Back to the Hospital

Submitted by kim on Thu, 05/29/2014 - 22:18 in Nathaniel's Story

If I have learned anything in the last ten months as Nathaniel's mom it is to trust my mother's intuition. I could kick myself for the not doing so in regards to a hunch I had that one of our night nurses was sleeping through her shift. Her inattentiveness Wednesday night landed Nathaniel, Rich and I in the emergency department Thursday morning.

I woke a little before five to the feed pump alarm. Every machine has multiple alarms each signaling specific problems. The alarm I was hearing was not logical at that hour. Before I picked up my head from the pillow, I knew that Nathaniel had not received his g-tube feed that runs for ten hours overnight. It provides the majority of his daily caloric and fluid intake. I checked the kitchen counter. There was his formula still in the jug where I leave it every night before I go to bed. 

In prep for surgery Wednesday morning, we cut Nathaniel's Tuesday night g-tube dose short. He received only a small amount of Pedialyte post surgery with discharge instructions to return to his feeding schedule with his Wednesday night feed. The one now still sitting on my counter. I asked the nurse if she changed a diaper during her shift. No. It was still dry. Nathaniel's last wet diaper was fifteen hours earlier. We sent the nurse home and called the doctor to discuss dehydration concerns. "Go to the emergency department," she said.

I could not bear going back to the hospital with Nathaniel alone. On the best of days, Nathaniel struggles coping with medical procedures. Currently a stethoscope makes him cry. There are a lot of stethoscopes at a children's hospital. All attached to professionals who want one little listen. One little look. One little thing more. Rich came with me. He held and rocked and protected and coaxed Nathaniel through getting hydrated.

Going through two hospital admissions in two days made me realize how much Nathaniel information I carry in my head but do not have written down. I have a written list of his doctors, his medications, and his daily schedule. There is so much more. Diagnosis. Size of trach tube. Current ratio of free water to kilogram administered by g-tube. Date last time oxygen was required. I came home determined to make a list of these Nathaniel facts to add to our binder. It will make future admissions and appointments easier for me and provide Rich access to the information. Perhaps my list below will be helpful for others. It is a word document that will be in continual transition.  It can be edited to meet your child's needs. Email me if you have suggestions that should be added.

Nathaniel is home again and settling back into life. We requested Sleepy be dropped from our nursing schedule and were left without nursing last night while the agency tries to replace her. I am running on too much excitement, too much coffee, too little sleep. But being awake with Nathaniel through Thursday night allowed me to observe his tolerance of changes we have made in his feeding routine.

We met with Nathaniel's primary dietitian while in the emergency room and agreed to a huge overall with his g-tube regiment. No more all night feedings dependent on night nurses to administer. Breakfast. Lunch. Dinner. A double dose at bedtime. It is a change I have been working towards for three months and knew we would be making this summer.  I have made consistently small but aggressive incremental steps towards more formula faster. He now tolerates his day time feed in less than an hour. We will continue to increase the rate over the next few months with a goal of Nathaniel taking five ounces of formula in thirty minutes. In February, when we needed to change to a higher caloric formula, five ounces took two and a half hours. Faster caused vomiting. This feels like a huge victory for Nathaniel. He is taking the largest quantity of formula at the fastest rate he has ever tolerated. He is growing up.