The Common Cold, IV's, and Fire Trucks

I had planned my next blog post to be about our new homeschool year. Getting home from Cincinnati tumbled into a very busy week adjusting to a new school routine, learning our way around some new curriculum, and merging the role of teacher with mom again.

To celebrate the completion of our first school week, we spent a beautiful Saturday morning playing and walking at the park. One of our new adventures this school year is to have a primary communication partner wear Nathaniel's talker so it is available to model his expressive language at all times. Rich continues to amaze me. He is fifty-five years old, has raised seven kids, and could be spending his Saturday morning doing so many other things. But he was at a playground, learning a second language, and proving with his whole being how much he believes Nathaniel can live a normal life. In our adoption interview, Rich told everyone that he expects to someday do a backpack trip at Philmont High Adventure Ranch with Nathaniel. Many had expressions of doubt. What I don't think they realized was that Rich would help Nathaniel train for that outing from the beginning. Because you don't wake up fifteen years down the road and tell a kid his disabilities shouldn't stop him. You get on your hands and knees day after day and show him.

After the park, we rented a Red Box, popped some popcorn, and settled in to rest. I planned to write during my Saturday night shift watching Nathaniel. He had different plans for my night. Increased secretions, coughing, and vomiting kept us awake most of the night. By four in the morning, we felt he needed to be evaluated at the hospital.

Nathaniel tested positive for the common cold virus. Unfortunately, with it comes common-to-Nathaniel symptoms that can sometimes require the support of the hospital and IV fluids. I fought an admission for three hours. I requested residents from ENT and Pulmonology come to the Emergency Unit to evaluate. Together we created a plan for going home and the if-he-does-this-list for coming back. I texted Nathaniel's siblings and grandparents that we were not staying. And then Nathaniel projectile vomited what appeared to be an entire feed. Heads shook. "Sorry Mom, he is going to get dehydrated. Let us start an IV now." They called for the Vein Team, and he was admitted.

I usually manage these admissions well, but not on Sunday. I sobbed hard in Rich's arms after the four IV attempts, the room emptied, and Nathaniel fell into an exhausted sleep. Watching him repeatedly suffer is very hard.

We were getting Nathaniel settled into his room when I heard a helicopter arrive at the hospital. About twenty minutes later a medic, Andrew, appeared at the door in a flight suit. We know Andrew from our ambulance district; he works flight transport for the hospital and street level in our district. He has been in our home and has loved on Nathaniel when we've done trainings at the station. A few weeks ago he ordered a Team Nathaniel wrist band. It was on his wrist Sunday. He shared the photo below to my Facebook page later that evening. Seeing Andrew at the door made me start crying again. It was like God was speaking to my heart, "I see Nathaniel from the highest of the heavens, Kim. I have written his name on my wrist with an everlasting love that will never fail."

The hospital stay has gone as well as can be expected when you didn't expect a hospital stay. Once we got through the EU phase, and I accepted that an admission was necessary, my attitude and our experience improved. (Those two, attitude and experience, are usually connected, aren't they?) Everyone tries very hard to mimic our home routine and support us as we continue to be Nathaniel's crib side primary care givers in an uncomfortable setting.

I can easily tire of the constant advocating hospitalizations require. Especially when sleep deprived. Especially after the week in Cincinnati where I worked doubly hard to help a new team learn about my son. When I am at the hospital, I miss family life going on at home without us.  When I am at home, I miss Rich and Nathaniel. Despite the familiarity with the process and the place, nothing feels right when Nathaniel is inpatient.

Visitors help. Nathaniel's EMS friends show up strong when he gets admitted to the hospital. He will not let go of a new fire truck that one of his biggest fans brought him yesterday. Sometimes I just have to smile at how God orchestrates Nathaniel's life. Last week, his speech therapist encouraged us to model vehicle words on the talker. Nathaniel loves cars and trucks right now, but did not know where to find them. With the hectic starting school days, there were few natural opportunities to use vehicle words, nor did I have time to plan play activities to steer our conversation that direction. (Steer. HA!)

But Nathaniel's new fire truck has given us many opportunities to discuss moving things. Child Life saw his enjoyment with that vehicle and has given him a red race car. The time in the hospital has given us a lot of Mommy and me play time. (And lots of blurry selfies!) I love watching Nathaniel's expressive language grow. He has learned which home page icon to use to find vehicles. Yesterday he used TRUCK for the fire truck, but today he started to use FIRE TRUCK specifically. Categorizing and distinguishing between the two choices shows not only language ability, but also Nathaniel's age-appropriate cognitive abilities. 

Speaking of Nathaniel's head - that "I'm Kind Of a Big Deal" sign in the top photo came with his fire truck. We are keeping it behind his back so that the message doesn't go to his head. In reality, we are honored that Nathaniel is a BIG DEAL to so many in the St. Louis EMS world. Last night I received an email from a local fire fighter who does not know our family personally, but became aware of our story through the ongoing community level training that the S.T.A.R.S. program offers departments. I want to share some of the email here because it was an encouragement to me to see how God uses suffering for good. 

"I know you do not know me, but I am a firefighter/paramedic, and in the middle of implementing STARS at my fire district. What I wanted to say is THANK YOU to you and Nathaniel. Thank you for believing in the STARS program, and helping its vision come to fruition. I am so excited to bring this program to my fire district, and to help some of our youngest residents. I want you to know that none of this would have been possible without your willingness to open your doors and welcome people into Nathaniel's world. You and Nathaniel are helping to change the future of EMS!!"

That shout out - that we are helping to change the future of EMS - is too much. He is just a kid and I am just a mom. Most days one or both of us is in tears about the daily struggles we face in our different roles on this journey. Our heroes are those who never seem to tire in encouraging and being available for us. Daddy on his hands and knees playing at the playground. Andrew arriving by helicopter just at the time I needed to know God saw us. The fire truck and sign giving EMS instructor visiting on a lunch break. The prayer warriors texting their faithfulness. Too many people doing too many things to continue to list. The huge shout out should go to Team Nathaniel and God for rallying again this week.