TRAINING FOR HOME

Solo surgery days started to become the norm for me during COVID, but it didn't make any of them more manageable. Caliyah had small bolsters on her eyes to protect her exophthalmos (protrusion of eyes), but unfortunately, the temporary fix didn't last long. She started to have issues with her eyes, and her eyelid was rolling behind her eye. The doctors quickly deemed this as a non-elective surgery and put it in the urgent category. So my first solo surgery day was on the horizon, and before I knew it, she also had a g-tube surgery scheduled. On our previous surgery days, Rome and I had our routine down to a tee; although we didn't talk much during them it was exactly how we liked it. No nervous chatter, we prayed and were at ease with the presence of each other. Now it was just me, face-timing Rome in, signing tons of paperwork, and waiting, hours of waiting. Luckily these surgeries were shorter, lower risk, and minor compared to her craniectomy. Thankfully she quickly bounced back after each one, and her recovery time was short. We were finally getting around to our monotonous hospital life schedule, and little did I know most of our big curveballs were behind us, at least for a few months.

Caliyah was weaned off her sedations, and her body was slowly getting used to her trach. She was making such significant progress except for one thing, excess secretions. You see, ever since Caliyah's tracheostomy, her secretions had been uncontrollable. High secretions are a big issue because she, unlike us, can't cough and clear her secretions, so as they build up, they can plug her small airway. This was frustrating for us because they kept saying her body would need to get bigger and stronger for her to be able to pass and control her secretions. This meant we were manually suctioning mucus through her catheter every 15 minutes, a task that is not feasible for moving to the medical floor or even coming home. It was hard news to hear, that what was keeping us from coming home was so out of our control.

Our Tracheostomy and Ventilator Handbook that we studied from for three months.

We decided to put her on a medicine that would dry up her oral and nose secretions. It took us five days and going up on her dosage several times to realize that it wasn't making a difference. As we felt defeated, we so badly need a glimpse of hope, and we got it. You see, making it out of the NICU meant one step closer to getting home. The medical floor is the last stop before you can get discharged, and that is where you get all your training from trach care, gtube, medication, and you get to be hands-on with care. We were told trach training was going to take two-three months, so every day we stayed in the NICU meant we were one day further away from home.

Well, one day, we finally got the call. They said since Caliyah's secretions were the only thing keeping her in the NICU, they would let us start our trach training. We would later find out that we were the first family they let start training while in the NICU! Trying to train through a pandemic was hard, I can't lie. Then add on the pressure that what we were learning was how to keep our baby alive, and that did not help. That kind of pressure will make you the most focused ever. Trach training was the most critical education that I ever received, and there was no room to have a failing grade.

We started our training in a closed-off conference room, spaced 6 feet apart, and wearing a mask. Our instructors would demonstrate our lessons on a doll, such as cleaning a stoma (the opening of where Caliyah's trach ), manually suctioning secretions, signs of respiratory failure, and more. Once we felt confident practicing on the doll, we would walk to Caliyah's room and get hands-on practice. Once our instructor, a respiratory therapist, felt like we aced our test, we got signed off and onto the next lesson. We had 14 hours of training that took us three months to do. We had to pause numerous times as the information became overwhelming, Rome’s schedule with work became hectic, and we couldn’t get the three hours often two times a week. We transitioned to virtual sessions to limit travel and contact, which was great for our schedules but made the learning process more complex. They sent us home with our own doll, a practice kit, and in between sessions, we would dive into our booklet. To be honest, the best learning came from being bedside and getting lots of hands-on practice, and having the nurses and RT our tutors.

Midway through our training in late April, it was starting to feel like home was attainable. For so long, we were told, "you will be here for a while," with no date in mind now. As we passed each class, we knew we were closer to our goal of home.