Shift change. This is a hospital term used to describe the hour in the day when the day nursing team passes the baton to the night nursing team as they “give report” about their specific patients and the happenings during the day. Shift changes at Zion’s hospital usually happen in the 7:00 hour, both in the morning and evening. The morning shift change in particular has always been a precarious time for Zion. He usually seems to have trouble in some way during this shift change. And sometimes that trouble has been code blue events. I recently realized that Zion has coded multiple times during the Sunday morning shift change in particular.
This past Sunday morning, at 7:41am, I got a call from the TCC. Normally when Zion has had a code event, the hospital team has waited to call me until after he has been stabilized. But this time, they called me as it was happening. I heard the loud code blue alarm going off in the background as the nurse was quickly informing me that Zion’s coloring went blue as his oxygen had dropped very low, and they were having trouble getting it back up. The team was still bagging him as we were speaking. I let her know, “I’m on my way”, quickly hung up, and told George what had happened and that we needed to leave immediately. For some reason, this code event really rattled me. I felt more scared and anxious for Zion than usual. Possibly because it was a little traumatizing hearing the code alarm still going off, when I was normally used to being called after the fact, when he was stabilized. I just kept praying for God to help Zion and have mercy on him.
By the time we arrived, Zion had already been whisked away to the PICU (pediatric ICU). He’s never been to the PICU before. No one really knew him over there. And only a parent of a chronically hospitalized child knows what a big learning curve it can be for a new medical team to learn a new child. I wished he could have gone back to the NICU where everyone knew him, but I requested it too late. I knew that I had to make peace with it, and do so quickly. We made sure to arrive by the time the team rounded on Zion that morning in the PICU. And it was so good we were there as we were able to correct details, fill in the gaps, and present our requests for parts of his care plan for the day. It was refreshing that the team was very receptive and didn’t have a lot of pushback to our requests.
At first, I was a little sad about the setback. Zion ended up getting put back on the home vent on Thursday in a different mode than last time. And he was doing so well this time around! Until the Sunday morning phone call, he had lasted almost three whole days on the home ventilator. This was amazing progress! But I disheartened as I noticed on Saturday that Zion had a little bit of mucus in his nose. That’s always the telltale warning sign of an upper respiratory infection. Especially considering my kids and I had been a little under the weather with one last week.
As I stood there on Sunday taking it all in, as Zion was being assessed by a new team in a new room, I felt God impress upon my heart that this was a good thing. Because now the PICU team was having a chance to get to know our son. This was so important, because if Zion needed to be re-hospitalized after going home, he would likely end up in the PICU. Only God can help you to see the blessing hidden within a trial. Here’s our little “punkin” the morning he arrived into the PICU.
Since being in the PICU, it’s been confirmed that Zion contracted the Rhinovirus (a cold) again. The first time he had it was back in Omaha – and it took about one month for him to heal from that. I’m hoping that he’s built up some immunity from the first exposure and that the virus will run its course in less time this time around. So far, he’s basically had good days and bad days. Monday wasn’t a good day as he was a little fussy with a low grade fever when I walked in, but that quickly left with prayer and anointing Zion with oil. Tuesday he seemed to be doing so well with his personality returning and he wasn’t producing as much mucus. Wednesday and today though he seemed to not be doing as well again. It’s so hard to see him crying during his painful coughing fits. The plan was to possibly send him back to the TCC today, but the pulmonologist decided that it was best he stay in the ICU a little longer. Zion’s basic needs in the ICU have been regular and consistent mucus clearing (from his nose and trach), receiving breathing treatments, and CPT (chest percussion) multiple times a day to help break up mucus in his lungs (he loves CPT so much)! The team also decided to put in a ng (nasogastric) tube from his nose down into his small intestine. Zion is being fed this way for the time being. The team felt that with his coughing fits, it was best to avoid putting the formula into his belly in case he had spit ups or vomiting from coughing (which is a risk for aspiration). I completely agreed – better to be safe than sorry.
Once Zion arrives back to the TCC, the plan will be to:
1. Continue healing from Rhinovirus while trying to stay healthy and not contract anymore other illnesses.
2. Get put back on the home vent. He needs to successfully stay on this at least 2 weeks in order to “prove” that he’s ready to come home.
3. George and I will continue to complete our medical and emergency training in order to care for Zion at home.
3. The last step in Zion’s home-going plan will be to recruit enough home nursing care for our specific needs at home. Zion cannot be discharged without the minimum amount of home nursing care scheduled.
As I reflect on Zion’s “brothers and sisters” in the Omaha Trisomy Tribe, some of them are now back at home and thriving. Others, like Zion, are still in the hospital, trying to overcome setbacks and sicknesses. This journey is so unpredictable and definitely will grow your faith if you will allow it to. It makes it all worth it when I remember the following truth:
“…we also glory in tribulations, knowing that tribulation produces perseverance; and perseverance, character; and character, hope. Now hope does not disappoint, because the love of God has been poured out in our hearts by the Holy Spirit who was given to us.”
– We thank the LORD for upholding our son’s life yet again. We don’t take these blessings for granted and know that each day of Zion’s life is a gift that is to be cherished.
– Ever since getting back from Omaha, Cincinnati Children’s has been unified with us in getting Zion home as soon as possible. We can see through the many decisions the team is making that their goals are to expedite this process for us. It’s refreshing to feel like we are all on the same team.
– Thank you to the kind person/people who recently sent gifts to our children. We don’t know who you are, but we want to thank you for brightening our children’s day! God bless you one hundred fold for your kindness!
– Thank you for praying for one of my best friends who has been battling cancer. This might seem like a strange entry for the “Praise” section to some, but I wanted to share that she went home to be with Jesus a little over a week ago. I praise the Lord for hearing our prayers to heal her and take her home quickly. She endured a lot of pain and discomfort during the last few years of her life, and I’m so relieved that she no longer has to suffer as she basks in the glory of her Heavenly Father.
– Please pray for quick healing of Zion’s cold. And pray that he can return to the TCC as quickly as possible.
– Pray for success when the team attempts to put Zion back on the home ventilator in the future.
– Zion might have an issue with delayed stomach absorption. Please pray for a diagnosis to confirm if he has this before he leaves the hospital.
– I’m in a phase of life where God is having me pour myself out all day long for my children. Zion seems to be making it clear that he is tired of being in the hospital and oftentimes is very unhappy during the times we are not there. This is why when I’m visiting him, I spend almost the entire time holding him, kissing him, talking to him and showing him lots of affection. At home, my other two children are in a very needy phase (with me in particular) lately – especially my 2 year old son. There are often tears when I leave to go to the hospital. Please pray that I would “redeem the time” when with them, would be present and free from distraction during my time with them, and that they would be comforted in my absence. And lastly please pray that God would FILL me anew every day with His love and grace so that I can continue to pour into my family. I love them so much.
– The reality is that, when our family gets sick, there’s a strong likelihood that Zion will also get it because we are a very affectionate family. Zion getting sick causes an extended delay in him coming home. Please pray that God would give us wisdom and discernment about how to balance living a normal life with also properly quarantining our family as we enter into this cold/flu season.
– Please pray for George, our head and the spiritual leader of our family. Pray for God to bless, equip and prepare him for what’s ahead. And pray that I can come alongside him to be the most loving helpmate that I can be for him.
– Ministry opportunities are abounding around me. I feel that when God presents a need or a situation to you (through someone sharing it with you), that it is an opportunity for us to live out our faith. It is an open door from God. Normally my first response is to always pray for the need. But I have felt convicted lately that I need to step out and do more, if it is within my power to do something, in some way. Please pray that I will have eyes to see the opportunities that are always before me and that I will be given grace and boldness to act and be the hands and feet of Jesus to hurting people.