A Plan for the Next Step
The outside door from the bedroom to a patio is open and I am watching fog roll off a pond just beyond the patio. Cool Ohio morning air is coming through the door requiring me to stay snuggled under the comforter. Our week at Cincinnati Children's Hospital for Nathaniel's evaluation by the Aerodigestive Clinic is over; we are spending the weekend at a friends' home before heading back to St. Louis. It was a good decision to come here and gradually re-enter real life. Generous hospitality and peaceful settings have a unique way of setting things back on course and calming chaos. I am thankful for this place to linger, to reflect, and to write this morning.
I posted daily updates on Nathaniel's Facebook page, Hold My Words through out our visit to Cincinnati Children's. Jump over there to get the nitty-gritty. I appreciated the friends who read there and sent me texts or emails asking, "How do you feel about all the news?" Yes, there are two layers - the actual findings and then how we feel about it. I will try to summarize both briefly here.
Things we knew about Nathaniel were confirmed in Cincinnati. His heart conditions are stable. His lungs look good and function well. His current g-tube feeding regiment and formula are good choices. The Cincinnati team affirmed our concerns that his airway is unstable. The surgeon commented, "He is a little boy who needs his tracheostomy tube and needs an airway reconstruction." Like our St. Louis doctors, the Aerodigestive team found Nathaniel's anatomy unique and very complex. The fact that he aspirates complicates things. At this stage, his aspiration prevents us from jumping straight to a surgery to correct the anatomy.
We learned a some new things about Nathaniel this week. He has extremely large and inflamed tonsils and adenoids. He also has tonsil tissue on the back of his tongue and epiglottis. Since no other causes for aspiration can be found, the Cincinnati team wants to start addressing his problems there, at the top of his airway. They have requested Nathaniel have a tonsillectomy and adenoidectomy to remove all the excessive tissue. We will give him some additional medications to help calm down the inflammation. We will do further diagnostic testing in three months to see if these changes have eliminated aspiration.
How does it all feel? Hopeful.
The advice we were following - to do nothing, to go live life to the fullest while waiting for accidents and illness to determine a solution for Nathaniel - did not make sense. Nathaniel's very life and protecting his brain from an oxygen deprivation accident is dependent on his tracheostomy tube staying in place and staying clear. His conditions place a tremendous responsibility on care givers, our family and his nursing staff. A level of responsibility that does not reside well with the motto: Live Life to the Fullest. The fact that the Cincinnati Aerodigestive team is willing to do something towards solving the problem brings hope.
There were many questions that could not be answered with this trip to Cincinnati. Do Nathaniel's vocal cords move? Why does he need an amino acid based formula? Will he always be g-tube fed? Is there an underlying syndrome? Why the hearing loss when an ear exam under sedation shows no evidence of fluid in his ears? Follow up is needed in many areas. Coordinating two teams in different cities will be required. Return trips are already being scheduled.
But for this morning, this weekend, the immediate months ahead... We have a plan of action. The solution may be found further down the road. That is enough for now. We trust in a God who gives faith and courage and endurance for the next step.
