September Cincinnati Trip - Day 1
Nathaniel is nestled in his make shift bed for a late nap and I thought I would try to get some information about today's test posted before he wakes. Thank you to those taking time to connect with me, letting me know you are praying, and asking how we are doing. I will try to respond as I can.
We arrived safely in Cincinnati last night. Emily, a homeschool senior in high school, is our travel companion. Emily spent about ten hours with us last week learning how to monitor Nathaniel for airway emergencies and how to suction. She and Nathaniel did great together in the backseat yesterday. With just three hours sleep, she stayed up until five this morning watching Nathaniel so I could sleep a few hours too. I am so relieved to have her along. Oh - and she's doing her school work too. Kids these days... so impressive.
Our long time friends, Bill and Gale, were at our hotel when we arrived. They helped carry everything in, brought us a meal made by someone from their church, and spent a lot of time trying to figure out how to attach bed rails to the sleeper sofa. I had expected to get a cot for Nathaniel, but this hotel does not offer cots. The sleeper sofa did not function well and when opened takes up the entire "livingroom" floor space. This prevents us from moving around Nathaniel to address his night time needs or emergencies, so I decided not to use it. We improvised a "crib." He slept very well.
I want to take a brief tangent and mention the unique ways Bill and Gale have entered into adoption care. We've known Bill and Gale for almost thirty years. They now live about an hour northeast of Cincinnati. For this trip and our trip in August, Bill and Gale have focused on meeting our needs, so that we could focus on Nathaniel's care. They have provided meals, fellowship, maps to the city, driving services, and companionship through appointments. They have organized meals through their church. They have gotten down on their knees to figure out how to attach a bed rail and to pray. Their faithfulness exemplifies how much can be done to support adopted children and families without actually taking a child into your home. Thanks Bill and Gale for putting hands and feet to the call on your lives to care for the weak and sick. Grace and peace, dear friends.
This morning started at Blue Ash Fire Department North Station. Fire Chief Brown and Assistant Chief Theders welcomed us to the station with Nathaniel's medical information in hand and telling me they read my blog. I am always encouraged when departments take seriously being prepared for the community they serve. Blue Ash has gone above and beyond in trying to prepare for visitors. Thank you! We were able to meet today's crew and share a bit about the trach emergencies that we have experienced. We hope to arrange some additional training for other crews and get Nathaniel back to the fire house later this week. I hope we can stay in the Blue Ash fire district for all our future trips to Cincinnati; their kindness, appropriate questions, and commitment to assist us was top notch.
Yes, there will be future trips. Nathaniel had a FEES test today and it gave us no new information. He cooperated as well as could be expected when someone sticks a camera up your nose and then wants you to drink after taking nothing by mouth for a year. Actually, the drinking was the easy part. Nathaniel was eager to have to green dyed apple juice. The speech therapist, whose part is to feed Nathaniel and observe him externally, was impressed with his oral skills and strong swallow. We did suction green tinged secretions out of his trach immediately after he drank, which means there is still some level of aspiration. He had the same eating pattern that I have seen since day one: willingness and desire, first few bits or swallows go well, and then coughing and gagging, choking and vomiting.
Unfortunately, the ENT managing the camera part of the study was not able to see Nathaniel's swallow. There was too much tonsil and adenoid tissue. He struggled to find Nathaniel's epiglottis through all the excess tissue. He could not see the vocal chords, therefore we still do not know if they can move. The team was encouraged that not all of the juice that Nathaniel took in came come out his trach. It was clear that he did swallow some, if not the majority, of the juice. However, no one can say if the full amount of juice did not come out of the trach because he has some normal swallow function and protection of his airway or if the stenosis (the abnormal narrowing of his trachea) is protecting his airway.
We will repeat the FEES study and last year's video x-ray swallow study here in Cincinnati after Nathaniel has healed from the tonsil and adenoid surgery. I already have dates for a return trip in November for a post-surgery diagnostic look at his trachea. Hopefully these swallow studies can be arranged for the same week.
No big plans for this afternoon and evening. I noticed Blue Ash has a new park and playground so maybe we will take Nathaniel there for a bit. Tonsil and adenoid surgery is tomorrow morning and he will be admitted afterwards for observation. A few specific prayer requests for the next couple days would be all the normal surgery things, success in the surgery clearing up Nathaniel's upper airway, and my stamina as the primary caregiver in a very big and still-new-to-me hospital. Please check out Nathaniel's Facebook page (LIKE IT!) to stay connected until I have a chance to blog again.