Want to High Five About My Progress?
I took Nathaniel for his pre-Cincinnati pediatrician check up this morning. He needs clearance from his primary care doctor prior to every visit. The doctor gave both of us a high five after hearing an update and giving Nathaniel a quick exam. "Congratulations on getting him this far," he said, "I know it has been hard and long, but this is a different kid than I saw six months ago."
I would agree. The tonsillectomy and adenoidectomy were a game changer. Nathaniel's suctioning needs have gone from a baseline of three to four times an hour to three or four times a day. I hear swallows. And while I do not want to get too hopeful that he has stopped aspirating, I know he has eaten play dough in the last month and not once have we suctioned colored secretions. Something has changed. I am eager to return to Cincinnati next week and find out exactly what has changed and to what degree.
At the same time, I am hesitant to return. Almost more than our August trip, this round of testing should tell us if Nathaniel is a candidate for airway reconstruction. I watched a fellow trach momma give an interview on the news last night and she described her fear of an airway emergency. The explanation of her child turning blue, going limp, and having to work quickly to save his life was all too familiar to our family. Her interview made me cry. As much as we want a solution for Nathaniel's airway, there is a whole new set of fears that comes with that process. This friend's son has had one airway reconstruction surgery. It failed. Nathaniel being a candidate for airway reconstruction is just the next step. The surgery is big. The risks are huge. Like a runner training for a marathon, today's high five from the pediatrician is probably somewhere between mile eight and ten of our longest training run.
Next week we hope to find out if we get to run the big race of reconstruction surgery and hopefully some insight on how soon race day could be for us. Rich will not be able to come along due to work. A friend of Ben's from college ministry group will be traveling with me. She will drive so I can be in back with Nathaniel, be my second set of hands for nightly bath and trach ties, and help with supervising him at night. We made the arrangements over the phone without meeting. When we met, I learned that this young woman is currently living with a family we have know for almost three decades and recently returned from the mission field where she served with another family we have known equally as long. The overlap in acquaintances is reassuring. She is a stranger to me, but not to God or serving. I am thankful for her willingness to enter into Nathaniel's journey and look forward to getting to know her.
Also different this trip is that we will be staying at Cincinnati Ronald McDonald House. Our trip will be just four nights. They have a few rooms that can be reserved for short term stays and had an opening for us. The RMH is very close to the hospital which will allow me to walk to appointments while our travel companion sleeps. I am silly excited about taking a photo of Nathaniel sitting next to the classic Ronald statue.
Please pray for our trip. Pray that Nathaniel stay healthy. Pray for travel safety and for the strength to care for him. We leave on Sunday. Nathaniel has a swallow study, FEES, on Monday. He goes to the operating room for diagnostic scopes and a sedated hearing test on Wednesday. He has a second swallow study, VSS, on Thursday, and then we will drive home that same day. We will get preliminary results as we go through the week, but will probably have to wait a week after getting home to know a full report from tests and the treatment plan.
Want to give us your own high five? Pick up a Team Nathaniel wrist band for you and friend, and then post a photo of your high five to our Facebook page. Orders placed by tomorrow evening will be mailed Friday.
100% Silicone Wristband. Gray with blue debossed letters. HOLD MY WORDS on one side; TEAM NATHANIEL on the opposite.
Child Size: 5 7/8" (generally fits preschool and kindergarten age children)
Adult Small Size: 6 6/8" (generally fits elementary age children and small adults)
Adult Medium Size: 7 3/8" (generally fits most adults)
Adult Large Size: 8 3/8" (fits larger wrists)
NOTE: If ordering an assorted pack of three, please specify the sizes on your order form.
Price includes shipping within the United States.
Photo credit: Emily Beardslee