Decan a thon

7 weeks old to 7 years old, our Sophia has been on a marathon to where we are today. A decan a thon to be more specific. On February 9, 2012, we started on a journey we had never planned and on September 25, 2019, we have now set out on a whole new adventure. Our sweet super Sophia, now has a naked neck.

We have been status quo for the past few years with Sophia. No changes but things were going well. Plus, I have been pregnant twice in the past two years so yeah we've been a little busy on this Rhodes Family Adventure.  Last October, we went in for our routine scope and the doctors said Sophia's airway looked the best it ever has in years. They scheduled a sleep study for January. Long story short, it was the worst experience I had ever had with a sleep study. I knew it in my gut that it was not a true and accurate representation of what Sophia could do. So I spoke up and reached out to her doctors. They listened to me. They agreed with me and said lets do it again. This June, I was FINALLY able to get her back in for a sleep study redo. What a difference. We walked out of there and I said to my husband that whatever the results say this time I know we gave it our best and I was pleased with how things went with the sleep study people. It took several weeks for the results to come back and our doctors said they were so pleased with the results they wanted to skip ahead to a decannulation trial!!!  I couldn't believe it. Wow. This is a step we have not even considered trying since she was a baby. For the next few months, it stayed in the back of my mind and on my heart. See in the mix of all of this, I was pregnant with our third baby. On a whole different side of things, I was worrying about my pregnancy and new baby on the way. With this pregnancy, I faced a vanishing twin and endured many tests to assure our baby was healthy. I knew I needed to schedule it out after my csection. SO I literally schedule her trial at my 8 weeks clearance from my surgery. As the day approached closure, I started thinking more and more about it but never let myself get too excited or dwell on the what if too long. We were cautious. We packed up and heading off not knowing exactly what was going to happen next. You know when you have wanted something so long and you daydream about that day on long drives alone in the car or in the shower and you picture it in your mind and your eyes fill with tears just thinking about that thing... When it happens its like a daydream. Sophia went into surgery on Weds. Sept 25 for a scope before the decan trial. One doctor literally walked into the pre-op room dancing over her sleep study results. Joking about how they approach decanulation like porcupines make love....very very carefully lol. When they called us back while she was in recovery to discuss what they saw in the OR their tones had changed. Her airway was still complex with some crowding, but they were still confident and cautiously optimistic she was ready for a try. They admitted us to the hospital and gave Sophia some time to recover from the anesthesia. That evening I had the pleasure of pulling out her trach for what I didn't know then would be the last time. With her trach out and a bandage over the stoma we settled in for the evening. She very much disliked being connected to all the monitors and the IV in her hand. She said she felt trapped like the genie in the lamp. Once tucked in for the night, I left to go put the boys to bed for the evening. The next morning as I pulled into the parking garage back at the hospital, my husband called and asked if I had any questions for the doctor. I just said yeah how did the first night go? She (the doctor) starts explaining things to me like water restrictions still apply but you do not have to carry the suction machine etc.... I stopped her. "Wait, what are you telling me right now"? IS Sophia going home like she is right now...untrached? She said YES. I froze. Hung up the phone and raced upstairs to her hospital room tears rolling down my face the entire way. I met Sophia and John in the hallway outside her room and we embraced and just cried. I hugged that girl of mine with every ounce of love I had to give. See for John and I, this was a moment that seemed just out of grasp for so so long and to our Sophia it was....it was just a thing that happened. For years, I dreamt of throwing her this huge celebration IF and WHEN this day arrived. I dreamt of all the bounce houses and balloons and party hats and magical floating confetti. I would shout it from the mountains tops if I could. However, it didn't take John and I long to see that this HUGE celebratory event to us was a little scary and confusing to our girl. Actually, I must admitted John was the one that grounded me first and said I think we need to take it more subtly for her. See, having a trach was all she has ever known. It was literally apart of her. Her normal. Ours too, but it was something we BECAME accustom too. There was no transition time for Sophia it was what it was....her way of life. Having a trach is the only thing she has ever known. She said to us, I don't understand why people are so proud of me and why people are crying. REALITY. Halt the confetti. This girl had never known she was "different" because John and I never treated her as such. We did our jobs. She wasn't naive to her limitations, we embraced and empowered her to own them. It was our way of life. THEN all of sudden, something went missing. A part of her no longer needed. So we calmed down, explained to her that she may see people with happy tears and hear congratulations. Scrambling I told her it was kind of like when a person looses a tooth and they are so excited to show it off, And there's a change because a new one will take its place. I told her this was a change like that. That it wasn't a bad thing that it was there or now that it was gone. People were proud and excited for her for that new change. Before we left the hospital, the nursing staff threw her a little celebration with funny hats and sang a song about "if your trach is out and her neck will surely show it clap your hands lol and she got to change the sign to 48. When we left the hospital she was the 48th person to get their trach out this year. During the party she smiled half smiles and after wards said it was nice. Before we went home, one of the NP that I often emailed about Sophia came in to meet me in person and to express to me that it was my concern and follow through that got us her today. She said she knew when I first emailed that I was a parent that knew what she was talking about and they were so happy I spoke up about the sleep study to get us where we were at today. That was a proud mom moment too. Moms know best. It was then John turned to me and said the real congratulations goes to you Amanda. Not so much Sophia because she was just living life but you. You and us-- you got her here. Talk about tears. All the love in the world to him and his support and love for his family. So not only are things changing for Sophia but things are going to change for us too. So much for us too.

Its only been a few days now that she's been trach free and embracing her new naked neck but things are going great. We are again all navigating our new normal. She keeps asking questions as they come up. Yesterday, I walked her into school along with her nurse for the first time ever and LEFT THE SUCTION MACHINE AT HOME!! Talk about a weight literally off your shoulders, LITERALLY lol. It kinda felt like I left the house without pants or something. She was nervous going into school. Asking if she would be able to talk to her friends the same and do this the same. Its crazy to slow down and see this change from her perspective. After a few fist bumps and hugs from her classmates and some welcome backs, she was good to go. She has the sweet classmates and teacher. They all hand wrote and made her cards and sent her balloons to the hospital. Melt my heart. We probably enjoyed reading their 2 grade thoughtful probably more than she did. I know they all played an important role into Sophia feeling herself back to school.

Now, I am sure there are people that will instantly think it is out and everything is said and done but that is not really the case. We still have quite that journey and healing a head of us. With the trach out, Sophia continues to have an open hole in her airway (neck). It is being covered with a bandage for now. She is gradually learning to breathe fully from her nose and mouth as the Stoma (hole) closes. During the next 6-8 weeks, we have to watch her closely for signs of breathing issues or distress. We have to care for and dress the opening in her neck multiple times a day. We have to check her O2 levels and watch her respiratory rate. In 6-8 weeks, we will go back to the OR for a follow up scope and they will assess then how well she is doing. If her stoma hasn't closed on its own then they will surgically close it for her. There is a good chance she will need the stoma surgery because she has formed new healthy skin at the trachea opening. I am proud to say that many a doctors have complimented me for excellent trach care...clap clap. Then she will have another hospital stay and some recovery time for that as well. Once that hole is completely closed and she is ready we are going to do all the things!  ALL. THE. THINGS. You see over the years there has been adjustments to how we do certain things and some things we could not do. There will still always be certain differences and that's ok too. I imagine over the next several months, we will slowly start adding some of those things and simple joys into our and her life. I can't wait to see her face turn towards the shower, opening play in the sand or at the beach and splash in the pool. Having kids and getting to watch them enjoy things for the first time is one of the most rewarding things about parenthood. Never take those things for granted. A few weeks ago we got the joy of watching our son swim for the first time. So much fun. It fills you with such joy to watch them explore and see them happy. Being able to see Sophia enjoy these new moments in life won't only fill us with joy but exhilaration and liberation. I just can't even express how excited I am for her (and US) and all these new little things she will get to experience over time. Her bothers may never remember their sister with a trach but I know their lives will forever be touched by this experience too. I have been given the best family. This family was meant to be mine and I am so grateful for all these experiences we have had and will continue to have. NOW....BRING ON THE VACATIONS!!!! lol