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Augmented Communication - Part 1

Submitted by kim on Tue, 03/11/2014 - 19:51 in Augmented Communication, Lessons for Mom, Nathaniel's Story

I feel like skipping tonight! And it's not just the spring weather in St. Louis. Nathaniel participated in a two hour augmented communication study at St. Louis Children's Hospital today and it was AMAZING!

Let me back up and give some necessary info.

We know Nathaniel will be non-verbal for a number of years at least. His trachea abnormality prevents him from passing air over his vocal chords. As a side note, yes, that means Nathaniel does not make an audible cry. He cries like all babies, but the only sound is an increased respiratory rate. Everyone knows he needs a different way to communicate. The go to option of course is speech therapy.

On Private Duty Nursing and Glass Houses

Submitted by kim on Mon, 03/10/2014 - 20:46 in Lessons for Mom, Nathaniel's Story

Nathaniel came home from the hospital with round the clock private duty nursing. I would love to write a blog post on how smooth Nathaniel's second first night home went. But it didn't. We were up all night fixing problems the night nurse was creating. At two in the morning I asked her to sit in the living room. She had told me she was afraid to drive in the dark and I couldn't turn her out in the middle of the night.

And I would love to write that she was the exception and that all of Nathaniel's nurses since have been fantastic. But they haven't. I've come to realize that private duty nursing care is a lot like homeschooling. It is as good or bad as the individual doing the job.

Day Twenty-Three: Welcome Home Again

Submitted by kim on Thu, 03/06/2014 - 16:14 in Nathaniel's Story

A full body wiggle and smile greeted me every day
when I arrived at Ranken Jordan. Today we were going home!

Packing up Nathaniel's things and waiting for discharge. Ben and Josiah took a CPR for trach patients class while I worked with hospital staff on discharge.

Day Fifteen: Back to Children's Hospital

Submitted by kim on Sat, 03/01/2014 - 13:08 in Nathaniel's Story

The staff at Ranken Jordan determined a second goal prior to discharge was for Nathaniel's trachea to be evaluated and stabilized. Nathaniel had been scheduled for a bronchoscopy in July prior to placement with us, but the test was canceled due to a fever. It was rescheduled for the first week of August, which ended up being our third day at Ranken Jordan. At 5 p.m. the night before his Children's Division case manager canceled the test because there was no court order on file for him to receive general anesthesia. The test was rescheduled again.

Day Thirteen: Sitting in the Hot Seat

Submitted by kim on Fri, 02/28/2014 - 19:17 in Nathaniel's Story

I needed Nathaniel. It’s all sugar sweet and lovely to think about adoption simply as orphans needing families and loving families stepping in, but there is more to the story.

More to my story anyway.

Since becoming a Christian, I’ve questioned why God made me as He did. Try as hard as I could, I never seemed to fit into the mold being held up for Christian women. Quiet and gentle spirit? Nope! I’m a little bit to comfortable standing on the surround bench of our living room stone fireplace and shouting into a crowded room of party goers that I want their attention and I have something important to say. Yes, that just happened a few Saturdays ago.

Off to the Doctor... Again

Submitted by kim on Thu, 02/27/2014 - 06:37 in Nathaniel's Story

We are headed out the door to St. Louis Children's Hospital this morning and it seems the perfect occasion to share who currently makes up Nathaniel's amazing team of doctors. Collectively, we have about two or three doctor appointments a month.

Pediatrician - Like every baby, Nathaniel's pediatrician handles immunizations and well baby check-ups. He often defers to the specialists when decisions need made, but does an amazing job of staying informed on what they are doing and how it all fits together.

Newborn Medicine - This group treated Nathaniel in the NICU and will follow him for three years due to the collective complexity of his care needs. Think pediatrician on steroids.

Day Seven: Starting Over

Submitted by kim on Mon, 02/24/2014 - 20:37 in Nathaniel's Story

It will be very hard to put into a few words what Nathaniel's eighteen day stay at Ranken Jordan Pediatric Bridge Hospital meant to our family. The hospital specializes in moving medically complex children from acute care hospitalizations to home - a bridge. Everything about our experience from the moment we walked through the door was geared toward getting Nathaniel ready for home and making sure home was ready for Nathaniel.

Day Six: A New Hospital

Submitted by kim on Sun, 02/23/2014 - 18:33 in Adoption, Nathaniel's Story

I had known since 8:30 that they were coming at 11 o'clock, but when they walked in the door dressed in blue and pushing an ambulance gurney, I stated to sob uncontrollably.

The resident standing next to me placed a comforting hand on my shoulder, "Mom is having a flashback," she explained to the transport crew. "Let's give her a few more minutes with the baby and take everything very slowly."

We were moving Nathaniel to a new hospital - a pediatric rehabilitation hospital.

Waves of guilt poured over the flashback of our first night - drowning me. "He doesn't belong in a hospital," pounded in my head repeatedly.

Day Three: A Plan for the Weekend

Submitted by kim on Thu, 02/20/2014 - 21:14 in Adoption, Nathaniel's Story

We had been at the hospital for forty-eight hours when a nurse stopped me in the hall. "Kim," he said, "Can I talk to you?" I was returning from the vending machine having taken a moment away from the crib side. One of my first moments away.

I immediately assumed the worse. "No, the baby is fine," he said. "I'm the charge nurse on the floor tonight and I wanted to share an idea with you."

Day Two: Admitted to the Hospital

Submitted by kim on Wed, 02/19/2014 - 09:35 in Nathaniel's Story

Have you read Our Baby's First Night?
Starting there will explain why we were in an ambulance headed to the hospital.

The ambulance man in the white shirt asked me to promise one thing as we entered the emergency room garage - that I not take the baby home again until the nursing agency found a new night nurse. I promised. Then back doors opened and hospital fluorescent flooded what had become a calm space.

"Are you Mom?" someone asked.