I hope everyone enjoyed their 4th of July weekend!! We sure had a fun time at the lake. The boys played hard and went swimming, and memories were made at our favorite place.
I sort of left you all hanging after my post about answered prayers from our trip a couple of weeks ago in Cincinnati. I said I had more details to share, but I have yet to sit down and share the details of what we learned. I needed some time to process everything because it almost feels too good to be true. But I need my prayer warriors to come together for our Rhett as we embark on another adventure very soon.
We will be leaving to travel back to Cincinnati in a week from today. We had already planned on traveling back to adjust his programs on his new implant, but we quickly added some more things to this trip after our findings from our last trip. The last time we were in Cincinnati, Rhett had a capped sleep study. He had many wires and monitors attached to him so that he could be fully monitored while asleep with the cap over his trach. He had to do this to check for any apnea episodes and to make sure he was safe breathing through his upper airway while asleep. He did great while the doctors and nurses attached everything to his body, and quickly fell asleep. He slept all night long, and we even had to wake him up the next morning. If you know Rhett, he is always our wake up call and not typically the other way around. Normally it takes about 4-6 weeks for sleep studies to be reviewed and read by the doctors. The lead nurse conducting the study knew we had an appointment with ENT the next day, and put a rush on his study to be read. We got the results that next day, which was pretty unexpected, but we were so relieved. Our ENT went over the results with us, but since he is the ENT that follows Rhett for his ears, we had to wait until his ENT that covers his airway reviewed the results. I immediately emailed the nurse practitioner that I communicate pretty frequently with, and she responded with some very positive emails, but again we had to wait for Rhett’s airway ENT and Pulmonologist to review the results of the study before we knew what next steps would be. The doctors quickly reviewed results and let us know that the next steps for Rhett’s airway management would be to scope his airway and do a decannulation trial. That means we will remove the trach and he will be monitored in the hospital for 48 hours to make sure he does not go into any distress when breathing without the trach. We were extremely excited to learn of this plan, especially since it has been a long time coming. We have waited so long to get to this point, and it almost feels to good to be true to know we are so close to Rhett being trach free. I decided to wait before sharing details until I knew more of a timeline for when things would happen. Cincinnati is truly amazing for scheduling things when we already have trips planned. I was expecting the scopes to take place in a couple of months, but somehow they were able to get them scheduled for next Wednesday! They knew we would be there on Friday for more Cochlear Implant mapping, so they got Rhett scheduled for scopes during this trip to hopefully help cut down on our travels.
That was super wordy and detailed. So in case I lost you, I will summarize what will happen next week when we are in Cincinnati. We will travel back to Cincinnati next Tuesday, and Rhett will be scoped next Wednesday. That means he will go under anesthesia and have his airway and lungs checked out. As long as everything looks good with his scopes, he will be admitted to the Complex Airway Unit. While he is admitted, the doctors will remove his trach and Rhett will be monitored for 48 hours. As long as Rhett does well with his breathing during this time, he will leave the hospital without a trach. Yes!! You read that correctly!! Rhett could possibly come home trach free after next week!!! That still sounds too good to be true, and I do not want to get my hopes up yet. We are always hoping for the best, though. Rhett will also have his Cochlear Implant adjusted during this trip, and after this visit we are hoping to be ready to transfer care to our local audiologist. Rhett is doing fantastic with his new implant, and we are so excited to see him grow with his new device.
Please pray for our trip next week. Pray that Rhett’s scopes will go well, and the doctors are pleased with what they see. Rhett will have to do another COVID test, and it has been really terrible each time he has had to do them. Pray he handles it well, and that it is again negative. Pray that Rhett will breathe easy once the trach is removed, and that he does not go into any distress breathing on his own. Pray that this is the trip that Rhett will come home without the trach. Pray that Rhett continues to respond well with his new implant, and that we are able to work him through the programs to give him the best hearing possible.
Thank you for keeping up with the craziness of our life, and for following along Rhett’s journey with us. We are so thankful for all of your prayers and support as we work through the medical puzzle of Rhett.