Today is one of those days that we have waited on for years, but also a day that has brought me much happiness and grief over the past few years. Today is the day Chris and I got married, and what would be our third wedding anniversary. However today this date takes on a new significance as well, because today, Zeke will be getting his trach removed! January 4th has previously been a day full of so many emotions, and I’m sure today will be no different.
This day three years ago was one of the happiest days of my life standing in Chris’s best friend Corey’s living room, and marrying Chris. We didn’t have a lavish wedding, and had no attendants other than Corey, but as we stood there we had everything we needed in this world, God, love, and each other. After losing Chris, this day has been difficult. It has been plagued with the what could have been thoughts. Instead of focusing on those thoughts though, I have tried to use this day as a day of remembrance of our love and what it taught me. After two failed marriages, both Chris and I swore we would never get married again, but God had different plans. I wholeheartedly believe that God gave me Chris, even though brief, to show me what a loving, trusting, and healthy relationship can look like. I believe God gave me Chris to renew my faith in not only marriage but in the perfectness of His plans.
Today, January 4th takes on a new adventure, and such a huge milestone for Zeke. Chris was there to watch Zeke take his first steps, to help him learn so many things, to love him, and to be his “Dada”. I couldn’t think of a more perfect date than our anniversary to be Zeke’s day for decannulation. Zeke had the tracheostomy placed in March of 2018, and we weren’t sure when, if ever, he would be able to get rid of it. Getting the tracheostomy was such a life changing event for all of us. Getting the trach meant almost two years of being tied to tubes for oxygen. The trach meant having nurses in our house 24 hours a day. The trach meant restricted activities and vacations. The trach meant further speech delays. The trach meant medical equipment and supplies overtaking our dinning room and almost all storage spaces including the attic. The trach meant regimented treatment schedules that could not be deviated. The trach meant modifying everything Zeke interacts with from toys to the vehicle I drive to accommodate the needed medical equipment. The trach meant training for me on trach care, changes, CPR, and so many other things. Most importantly though, the trach meant safe sleep for Zeke, and a way for him to breathe.
Zeke has endured 1,749 days, 41,976 hours, and 2,518,560 minutes with this trach. Zeke has endured over 1800 trach care sessions, over 250 trach changes, 4 life flights, 3 hospital stays of over 3 weeks, and countless hospital visits and procedures. He’s learned to tell me or his nurses when he needs to be suctioned, can put his cap on his trach, attach oxygen tubing, turn on his oxygen, bipap machine, and nebulizer, and self administer his oral meds. When I say that Zeke is a boss, I mean it with every ounce of my body. Zeke is tough as nails and has learned to overcome all of the things that this trach meant for his life.
As I did Zeke’s last trach care last night all sorts of emotions welled up in me. While we have all been waiting anxiously and praying for this day to come, removing the trach truly means a complete change for our family. I cannot express how thankful I am for the nurses that have been with us over the past 4 years and 10 months. They have truly become part of our family, as they are always there. They are with us for meals, family celebrations, school, and all aspects of our daily lives. We have learned so much about them and their families, and Zeke has become friends with their children. Knowing that we won’t have those “family” members present on a daily basis anymore makes this process a little bittersweet. At the same time though, I am beyond excited for what a trach free life looks like for Zeke. While he will still have plenty of treatments to do each day, he won’t have the restrictions of the trach. I think he will be most excited about swimming without as much fear; although I think my fears were bigger than his. It also means he can travel more freely without the need for oxygen, the ever present “go-bag” for emergency trach situations, and the suction machine all traveling with us. It will also mean he can be as rough as he wants without the fear of accidentally dislodging the trach. Trach free life will be a big change, but such a huge blessing.
Zeke has been counting down the days for this decannulation, and despite a last minute reschedule due to pneumonia, the day has arrived. When Zeke woke up today and started his treatments he confidently told me, “No more trach”! Joy filled my heart as he said those words, because I know how excited he is despite the nervousness of having to stay at the hospital overnight. All the way to the hospital he continued with the excited chatter about having “no trach”, but also said “no hospital”. I should have known that this was a good indication that he was going to be very upset with staying at the hospital tonight.
When we arrived to the hospital we went through all the normal procedures for getting checked in and waited for them to call him back. Zeke has had this laryngoscopy done multiple times before, but today’s was a little more nerve wracking since I knew the trach removal would hinge on his airways being structurally clear, and having no issues. Zeke momentarily threw a fit when he had to go back and leave us, but I was assured by the doctor that he stopped the tears quickly after we left. As I sat in the waiting room I said a prayer that all would be good with the procedure so that we could continue with the trach removal. GOD IS GOOD. The doctor came out within about 30 minutes to let us know that everything looked good and Zeke would be losing the trach as soon as we got moved up to a room.
From recovery, to the time we got to his room, Zeke’s only concerns were “trach out, eat, go home”. He was livid to say the least when we reminded him that he would have to stay the night tonight for observation. I had asked Zeke several times if he was going to pull his trach out or if he wanted me to, and everytime I have asked, he has said “Jamie do it”. I was interested to see if that would be the case, and sure enough when the time came I asked him again and again he said “Jamie do it”. I’m beyond thankful for my boyfriend Jamie for being there for us today, and for all he does, but also thankful that he is there for Zeke and willing to do the hard things when asked. Just as Zeke requested Jamie took the trach out when it was time. Zeke had tears, not because the trach was gone, but because he wanted food, and to go home. Hangry is an understatement at this point for where Zeke was at emotionally. After calming down and getting some food in his stomach, he was happy to sit back and play Mario Cart with Jamie.
Today has been such an emotional roller coaster, and is such a huge milestone in life for Zeke. Fearful of how things would go today is probably the best way to describe how I have been feeling the past week or so. Fearful of whether the scope would be good, fearful of Zeke’s reaction to the trach being gone, and fearful for the immense changes coming for our family with this milestone. However, I know without a doubt there is nothing to fear. God has been here through the past 1,749 days of this journey, and He will continue to be with us as we proceed. I remind myself every time I start being fearful that God’s plans are perfect and Fear is a Liar!
Fear is a Liar 
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