“It’s like when Zion came home, the world changed.”
Our nurse said this the first day she came to work with us at home. I couldn’t agree more.
The timing of how this all happened with Zion coming home has been surreal. So much has been going on both in our home and outside in the world since the day we brought him home that it’s been hard to wrap my mind around it all. The second Zion got home was when this pandemic was starting to become a big deal in America. We didn’t realize until after Zion was home that there were massive shortages in grocery stores. So we spent the next week running out to stock up on food and much needed items for Zion’s care including his formula and ensuring we had 90-day supplies of all of his meds. It was a very busy and hectic time. However, I still am amazed at the kindness of the Lord, to deliver our son home to us, just as this crazy pandemic was beginning to unfold here in America. Words cannot fully express how grateful I am to God that Zion is home during a time like this. God only knows how difficult this would have been for me (emotionally) to have Zion still in the hospital during this time of so many uncertainties. But in His loving kindness He spared us of that.
The day we brought Zion home was so bittersweet. As we were crossing the bridge from Ohio into Kentucky, I was in awe that little Zion was actually in the car WITH us, looking out the window. The long hospital journey was finally over. But as I reflected on that, we got a phone call. Our dear neighbor “Miss Judie” unexpectedly lost her husband after a routine surgery. We were in complete shock and heartbroken for her as our joy collided with deep sadness. Will you please pray for Judie as she enters this new phase of life without her dear husband? Not having any family close by, we have officially welcomed her into our own family. We promised her that she will not be alone in this.
He heals the brokenhearted and binds up their wounds.Psalm 147:3
Deep breath… Zion is HOME! At two months in, I still can’t believe it’s true. He settled in quickly to his home – I believe he truly knew where he was on some level. And we have seen so many positive changes in our son since his arrival. We are seeing him achieve new milestones! For example, he now reaches and attempts to grab toys on his mobile. And the other morning while holding him upright, he started repeatedly and (and vigorously I might add) pushing up and bearing weight on both of his legs. He’s never done that before! He is attempting to roll onto his belly, but the circuit seems to get into his way. He also has a plethora of new expressions and smiles that he makes. For the first time ever he actually smiles back in response to our playful speaking. His heart rate is much lower at home. His oxygen saturations are also much improved with deep desaturations now becoming a rare thing. He’s incredibly predictable and on a pretty consistent nap schedule. And (most of the time) he sleeps through the entire night, “like a baby”. 🙂
The first couple weeks though were a steep learning curve. It took time to figure out how to juggle Zion and our other two children. But my husband and I have taken up the “divide and conquer” approach. When we don’t have a home nurse with us, one of us is always on Zion-duty, while the other is attending to the older children. Caring for Zion can be intense at moments, but we have been comforted to discover that there are many pockets of time in the day where we don’t have to be as focused on his needs, such as when he’s napping, or just peacefully hanging out daydreaming and smiling.
We also have had practice in preparing for not one, but two tornado warnings – the first one happening shortly after Zion came home. Let’s just say, the first time mild panic ensued. However, by the second one a couple weeks later, we were more prepared with a plan in place. Since then we have learned to keep many of Zion’s necessary items in the basement since we are now entering tornado season. And we have thought all things through should we lose power or be stuck in the basement for 1-2 days. Thankfully we have been registered with our power company’s life support program, so we should be one of the first to have power put back on in the event of an outage or to have a rescue squad come in the event of a natural catastrophe like a tornado.
We were pleased to see how quickly our other two children became accustomed to Zion’s presence (with all of his massive set up). One of our concerns was the kids messing around with his equipment. However our strategy of moving their toys into the dining room (creating a “toy room”) has worked well. They spend most of their day playing in the other room. And when they do happen to be in the living room with Zion, they have been very obedient in not touching his equipment. Our oldest (almost 5) has taken on the role of being “Mommy #2”, as expected. She excitedly alerts us when he’s coughing or has water in his circuit tubing, which has proven to be very helpful when we need to step away. She knows how to find his various medical supplies we might be needing when our hands are full. She even notices (from the other room) the unique sounds his ventilator makes when he is in trouble. She also really wants to help suction his trach, but we have told her some things are a simple No-No. But the most amazing thing is to watch her interact with her little brother. She talks to Zion, touches Zion, kisses Zion in the exact same ways that I do. I have been marveling at this because I see that, all along while in the hospital, she has been actually studying me very closely, and now imitates it perfectly. I sometimes have to tell her to stop smothering him so much with kisses, but then I realize that I must do that myself! Our older son (3) on the other hand doesn’t pay much attention to Zion just yet, other than the occasional request to “see Zion”, which only lasts a moment. But it’s heartwarming to see Zion’s eyes light up when he gets that rare visit from his big brother. It’s beautiful to see the siblings all together at home finally. I’m grateful that they will grow up learning the importance of loving “the least” of us.
The first day he was home, we didn’t have a home nurse. It was a little scary to realize that we were truly on our own! So that night, I chose to sleep with Zion, IN his bed, because I was so scared I might mess up and do something to cause him to die, on the first night. Thankfully that hasn’t happened. If anything, God has proven that He truly has equipped us for a time such as this. All that we have learned we have been putting into practice and it’s been going VERY well!
With a couple months under our belt, we have become acclimated to all the changes in our home. The sounds of all of Zion’s equipment at first seemed very loud, but now is a comforting white noise. It took some time time haggle back and forth with the necessary subspecialties in order to get orders changed for Zion’s pulse oximeter settings. The high/low alarms for his oxygen sat and heart rate weren’t set appropriately, and therefore were dinging off constantly. Since then we got the alarms set more appropriately and that has made all the difference. It’s crucial to get those set properly so that caregivers don’t develop “alarm fatigue” and begin to block out the sound. Thankfully God has given me “ears to hear” the unique sounds Zion’s ventilator makes. I can hear the extra water in his vent tubing (which causes Zion problems) from all the way upstairs, and have even learned the sound of how his breathing on the vent changes when he is silently coughing, which wakes me up from sleep even before any alarm goes off. Because we have been able to be very attentive to Zion’s need for quick and frequent suctioning, we think this is what has allowed him to have such good oxygen saturations throughout the day. Those deep oxygen desats that he experienced in the hospital, for now, seem to be a thing of the past, thanks be to God. In talking recently to someone on Zion’s cardiology team, they expressed that many have been surprised that Zion hasn’t come back to the hospital yet with a bad event. With each passing day, I trust that Zion is creating new “data points” about Trisomy 18 patients (and their capabilities) in the minds of all of the doctors and nurses who have followed him. It is my hope that their expectations will be higher for future T-18 children (especially with open heart defects), based on what they have learned from Zion.
You might be wondering what type of routine we are on. Well, our home nurse comes to help us 4 days a week. She works a shift from 6am – 3pm. When she is here it’s an immense help because she literally does everything for Zion. So much so that I have found it hard (as a very involved type of mother) to not be doing something for Zion during the day. With each passing day though we have seen what an immense blessing our nurse is for our family. She truly is perfectly suited for us. She is very quiet and diligent when she’s here, to the point that you sometimes forget that she’s in the next room. And she is full of wisdom and great ideas. But the best part is how likeminded we are. We have so many things in common, which has made her quickly feel like a friend and a part of our family. At a time when we cannot attend church in person, God has brought fellowship to us, right smack into our home, through our nurse. Oh how refreshing it has been to be around someone full time who loves to talk about things of the Lord! I’ve said it before, we are SO blessed with the home nurse God selected for us! I tell her all the time – oftentimes with tears bubbling over, that she is our gift from God!
So you might be wondering what a typical day looks like for Zion/us when we don’t have a nurse? Below is an example schedule:
6am – This is when Zi usually wakes up. He gets his feeds, meds and nebulizer breathing treatments (aka “nebies”). If needed we perform CPT which helps loosen the mucus that’s been sitting in Zion’s chest from laying all night (this is a gentle percussion/tapping on his chest and back for 10-15 min).
9am – This is one of the busiest times of day as Zion gets about 5 meds and also gets fed again. By now if he hasn’t had a bowel movement, we give him a glycerin treatment to help him go. Between 6-9 is quite busy attending to lots of coughing and diaper changes, in addition to the above.
*Between 9-12 is a time when we proceed through a checklist of items that need attention daily for Zion. These include things like: doing trach tie changes, giving Zion a (sponge) bath in bed, rotating the pulse ox probe on his foot, changing and disinfecting parts of his circuit, changing out his feed and Farrell bags, a Lysol wipe/down of all of his equipment, verifying his water bag is full for his vent, cleaning his g tube, checking his trach cuff, cleaning the suction canister, cleaning/rinsing syringes and doing some mouth care. After these items are complete, it’s a time of rest for us because Zion usually is awake and content. The kids and I will play with him, sit him up and hold him for a bit. And at some point in the morning he usually takes a nap. At that time is when I try to tackle some homeschooling and quality time with the other two kids.
Noon – Zion gets a feed and some vitamins/supplements
2:00pm – Zion gets meds and nebs
3pm – Zion gets a feed
6pm – Zion gets a feed, his Vit D, and is usually taking a late afternoon nap around this time. This works perfectly with our dinner time.
9pm – 10:30pm – this is the last busy time with Zion before bedtime. One of us usually tackles all of Zion’s items, while the other bathes the kids and puts them to bed. During this time we give him a group of meds, more nebs, and another glycerin treatment if we feel it’s needed. We also have a nighttime checklist of items that need to be attended to such as: rotating the pulse ox probe on his foot again, doing trach/G tube stoma care/cleaning and preparing his feeds and meds for the early morning time (since the person spending the night with Zion is usually very groggy during that time).
11:00 – 3:00am = PRAY THAT ZION SLEEPS, SO WE CAN SLEEP!
3am – wake up to turn and suction Zion.
3:30am-6:00am – try to get some more sleep. This can be a precarious time. If Zion wakes up during the turning at 3am, it can lead to more frequent suctioning and attending to his alarms, which = little sleep.
On days when we do have a nurse, when 6AM rolls around, the person who slept with Zion is able to then go upstairs to bed to try to get a couple more hours of sleep before the kids get up.
We do hope to find a night nurse to help us out for 2-4 nights a week. In the meantime, George and I have found that a two nights on (with Zion), two nights off shift schedule works for us. I advocated to get his feed schedule altered to not have to feed him throughout the night (so that we can all sleep better). Because feeding equals pooping, which equals lots of coughing and suctioning, which equals lots of sleep disruption. Progress is being made because we have now condensed all of Zion’s feeds to be between 6am and 9pm. So no more night feeds has been a huge blessing for Zion, mommy and daddy!
We are so thankful to the many in our “village” who continue to help us. This help has come in the form of grocery shopping for us, porch-dropping items that we need for Zion, blessings of gifts and clothes for our other two children from multiple people, handmade blankets for Zion, more food and home cooked meals, monetary gifts, prayers, books and Words of encouragement for me, and needed medical supplies/equipment from our fellow T-18 community. Without a shadow of a doubt, the Lord continues to provide for our needs according to His promises. His love is so deep and so wide! It is never failing!
-Our main prayer request will be for our little Zion (and our family) to stay healthy, especially through this current pandemic. We know that illness will be inevitable at some point, but we hope that we can have a very long stretch of life at home before ever having to return to the hospital again.
-Zion’s eyes are beginning to turn inward more often. Please pray for healing, but so far our eye doctor isn’t concerned about his vision.
-Zion has one tooth that has been stuck under his gums for weeks now (see photo below). Please pray that it would break through the skin and provide some relief from the teething pain.
-My husband was laid off due to the quarantine. Please pray that God would provide a means of employment for my husband soon. On the bright side of that, it’s been a huge blessing to have his help at home since Zion came home! And it’s allowed for lots of family bonding time.
– I have been quite emotional since this pandemic started. I have been sad for our country for many reasons. And I also have concerns about what the future will look like. Pray that God can help me to stay focused on Him during this time of uncertainty. I have felt lead to fast and pray during this time, to draw closer to the Lord, so I’m grateful that others have desired to join me and fellowship with me during this time of isolation. Please pray the fast would be fruitful.
– Life with Zion requires immense ENDURANCE (especially on days without a nurse). Pray that God would give us the grace and endurance that we need for each day He has set before us.
– Now that Zion is home, we have new big asks of God (inspired by my 5 year old). Please pray that Zion would one day: walk, talk, and be able to breathe on his own without a ventilator. Yep – these are BIG prayers! But, as God says, “Behold, I am the LORD, the God of all flesh. Is anything too hard for me?” – Jeremiah 32:27
** Special prayer – please pray for healing and restoration of my dear Uncle Greg post chemotherapy treatments. He is very special to me and I attribute my faith in part to him and his wife/my Aunt. Thank you!
We thank everyone for following Zion’s story. I feel that my blogging/social media days are coming to an end due not only to the hectic schedule, but also to an unshakeable burden to give the Lord more of my time – so stay tuned for my farewell post!
“This I recall to my mind, therefore have I hope. It is of the Lord’s mercies that we are not consumed, because his compassions fail not. They are new every morning: great is thy faithfulness. The Lord is my portion, saith my soul; therefore will I hope in him. The Lord is good unto them that wait for him, to the soul that seeketh him. It is good that a man should both hope and quietly wait for the salvation of the Lord.”Lamentations 3:21-26