Wow. What a day. I am laying in a hospital bed with my trach free child, and my mind is going back to the very beginning. I am thinking back to all the things along the way that got us to this point, and it brings tears to my eyes to think about all he has been through. All we have been through. It’s a lot. My mind goes back to the NICU days. To the day Dale and I met with the ENT surgeon and decided that the best chance for Rhett was to give him the trach. How I HATED the trach for so long. All the suctioning. All the hauling around so much medical supplies to keep Rhett safe. Not being able to leave my house with Rhett unless someone could go with me so that I could ride in the back seat to suction as needed. Those early days seem so long ago, yet they seem like yesterday all in the same. As the years went on and we learned more and more about his airway, I hated the trach a little less and less. Because of the trach, Rhett has never had to struggle to breathe. Since he never had to worry about trying to breathe through his narrow airway, his body had the energy to grow and thrive in other areas. We finally got to the point that the trach didn’t seem like such a huge deal. I still wanted it gone, but it was no longer controlling my life. I could go places with just me and Rhett. The suctioning happened less and less until not at all in the last 3 months. My heart no longer beat out of my chest for trach changes, and I had grown to really appreciate the trach. And now it’s gone. And suddenly I’m overcome with so many emotions. I was not sure if we would ever make it to this day, and yet here we are. Rhett is beside me soundly sleeping without the trach, and it is the most beautiful sight.
Wednesday, July 15, 2020
I’ll start from the beginning of today. Rhett had a rough night last night, and I honestly think he is at that point where he knows where we are and what happens when we come here. I always tell him in advance to try to prepare him, but I don’t think he fully grasps it all until we have the long car ride and are in the hotel. He was sassy for all the nurses and doctors this morning, and I can’t say I blame him. After getting a swab stuck in your nose 3 times over the last month and a half due to COVID, I think you earn your right to be sassy. One of the great things of doing procedures during this time is the OR seems to pretty much run on schedule. The waiting room was also bare, and it seems nice and odd all in the same. I was a nervous wreck waiting for the scopes to be over. I always am, but this time I knew we had the possibility of decannulation. My hopes were already high, and I was not prepared for negative news had that been the case. The doctors called us to a private room as they always do to go over the pictures they took during the scopes. When we entered the room, Rhett’s ENT was smiling behind her mask. She was completely happy with how his airway looked, and was excited to share how it had never looked this good. The pulmonologist even compared his pictures to what a typical airway looks like. If you have learned anything about Rhett and CHARGE it’s that their anatomy often times looks anything but typical. They were both in agreement that the decannulation trial would happen today as scheduled.
We went to recovery to find Rhett still snoozing which is the norm for him after anesthesia. He normally wants to continue to sleep even after the anesthesia should be worn off enough for him to wake up. Today I put his cochlear implants on almost immediately after going to the PACU, and he immediately began to stir and wake up. That is super encouraging seeing the difference his new implant is having on his hearing. We soon left recovery to go to our room on the complex airway unit, and we waited a bit for Rhett to wake up even more. After an hour or so, it was time. The team of nurses and doctors came in to talk us through and supervise removing his trach for good! The trach came out, and Rhett has been doing amazing. As long as he keeps up his sats through the night, the decannulation will be permanent.
Thursday, July 16, 2020
Today was an uneventful day, which is exactly what you want in the hospital. The more boring, the better. Rhett came off all monitors, and was able to get up and play. We even got to leave the room to walk around, and Rhett got to ride around in a little car. Each time vitals were taken, Rhett was doing amazing. The nurses had him a little party, and he got to change the number of how many kids have gotten their trach out this year. Rhett was number 11 for this year at Cincinnati. He went to sleep on all monitors that night, and his sats continued to be exactly as they should be. It still amazes me that Rhett is breathing all on his own, just like you and me.
Friday, July 17, 2020
It’s Friday and it’s official! The trach is gone for good!! Rhett has been discharged, and now we are killing time before his audiology appointment for his new Cochlear Implant. At audiology, Rhett did some booth testing with his new implant on. It is amazing the difference this implant has had so far on his hearing. He is hearing sounds that he has never responded to before!! The audiologist gave Rhett 3 more programs to work through before his next mapping appointment. I am so excited to see the growth in his hearing over the next month.
I know 2020 has not been a good year for most, but this year will always hold a special place in our heart. 2020 has been Rhett’s year, and I am excited to see his growth being trach free with his new implant. Thank you to everyone for the prayers you have constantly poured over Rhett and our family. Stay tuned as we can now share our journey being trach free! We love you all!