We waited all day yesterday for ENT to arrive because Zion had a scheduled trach change. The decision was made that he was ready for the next size up trach. I was so excited to have this happen for Zion because I have been wanting to see how he does with a bigger trach for quite some time.
The ENT team arrived at the the very end of the day. They got set up around his bedside as the nurses gave Zion some medication to help him stay calm. Zion had many episodes yesterday of his sats dropping and taking a while to come back up. So when they put him on the neck roll, that happened again, so they had to wait some time for his sats to rise. Once his oxygen saturation was in the 70s, the doc looked over to me and asked if I was okay with them starting. I told them I was. I always, without fail, pray before any procedure on my child. One of the many things I ask is for the procedure to go well. But sometimes, God has other plans.
Everything moves very fast once a trach change begins because you are destabilizing a critical airway for a moment of time. They removed Zion’s trach and started putting the bigger trach in and the doctor was struggling for about 10 seconds (that’s a long time for a trach change). The tension was palpable. I stood up to better watch and stepped up my silent prayers as I watched my son squirming. After a couple more seconds he aborted the mission and they took a few more seconds to get his new trach that was his normal size back into his stoma. I was literally holding my breath and felt my chest tightening because that was a crucial moment as sometimes you can’t get a trach back into a stoma after a traumatic incident like this. Thank the Lord they did.
They connected the vent to his trach and the room was literally silent as we all watched Zion. His oxygen was sitting very low (in the teens and 20s) for a few minutes and just wasn’t coming up. I could see the nervous looks. The RT bagged him for a short time, but that didn’t seem to help. I started talking gently to Zion, telling him it will be okay, from where I was in the corner of the room. So the doctor asked me to come to the bedside to see if that would help him.
It did. His oxygen finally started coming back up as I talked to him softly and stroked his arm. I could feel a sense of defeat in the ENT team as they prepared to leave. I thanked the doctor for trying as he truly did the best he could. I heard him saying quietly to the nurse as he left that another attempt would have to be done in the OR, and the team would have to assess if the risk was one worth taking. As I spent some time comforting Zion and suctioning bloody secretions out of his trach, I recalled the doctor saying that he was going to bleed a bit from what happened.
The evening proved very harrowing for Zion though. His oxygen continued to dip and stay very low despite his ventilator being turned up to 100% oxygen and his nitric oxide (was was close to being turned off at 3) being brought back up to 20. The nurse told me around 1am that they had exhausted all their measures to oxygenate Zion so their last resort was to keep him on a paralytic drip and a morphine drip for the time being. Oh how the words “paralytic drip” broke my heart. The fear of Zion being unable to express his pain or discomfort due to being paralyzed ran through my head. But I had to push it out of my head. The Lord can comfort Zion behind the scenes while he is lying there still, and unable to express himself. I will rest in that knowledge.
I don’t know what this setback means in terms of Zion getting his cath in a few days. I shall find out more today hopefully. Thankful is an understatement for how I feel when I think of the group of mom’s I’m surrounded by out here. Just knowing each of their stories, and what their children have endured and come out of brings me hope today. I’m tearing up as I write this because of how much Zion has endured in just 4 months. I prayed this morning for God to give me Zion’s pain if he has any. I wish I could take it all on myself. But I can only trust that Jesus is doing that for me, because He died for what Zion is going through. The comfort that Zion needs is in Christ alone. I thanked God this morning, because it’s in these very difficult spots that we cling so close to Him.
I will rest and remain in this truth today…
For the LORD shall comfort Zion: he will comfort all her waste places; and he will make her wilderness like Eden, and her desert like the garden of the LORD; joy and gladness shall be found therein, thanksgiving, and the voice of melody. – Isaiah 51:3