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Since we started deputation, we have seen God provide time and time again. But, while we were down in Missouri this summer, He did something incredible. And we wanted to share some of the details with you.
But first a warning: this post talks about a medical situation, involving a feeding tube into the stomach. If topics like that turn your stomach, you should probably stop reading. You can read about our call to Missionary Acres instead!
A Bit of Backstory
Before diving into the story of God’s provision, it’s important to share a little backstory to set the stage…
We are currently staying at Missionary Acres for the summer, and using this as a temporary base while we travel to meetings in Missouri, Kansas, and Illinois. Being here also allows Bryan to volunteer with the staff as he’s able, and lets our kids to become familiar with this special place.
Our original plan was to head back to Washington at the end of July, following our ministry presentations in Kansas City, MO. However, we recently scheduled a mission’s conference in Kansas at the end of August. Thankfully, the administrator at the Acres was okay with us staying down here an extra month.
But, one of our concerns any time we leave our home area is our son’s medical needs. Owen, our teenage son, has Angelman Syndrome. It’s a deletion on the 15th chromosome. This syndrome means Owen is non-verbal, has severe epilepsy, and is globally developmentally delayed. You can learn more about Owen in this post.
As you can imagine, Owen’s medical needs are extensive, and he has a great care team back home. Traveling with a child with special needs can certainly throw some curve balls into your plans.
And this past week, we experienced a curve ball we were not expecting. Thankfully, it didn’t catch God by surprise, and He had a plan perfectly worked out. It was incredible to see it happen.
One other thing you should know about Owen is that he has a G-tube. When he was a baby, he aspirated on liquids, which meant all his food had to be given through the tube. Otherwise he’d choke on it and often develop pneumonia from the aspiration.
Praise the Lord, he has outgrown this, and the tube is not currently used for feeding purposes. However, Owen has a hard time getting gas out, so the tube is how we help him to do that. We hook a connection up and vent his stomach through it.
Since it’s used for venting, Owen’s doctors don’t want to remove the tube. He’s had it basically his whole life, so it makes more sense to keep it in.
Earlier this year, Owen started removing his tube quite frequently. He pulled it out several times in a week, often destroying the balloon that holds it in place in the process. Once he even ate his tube after he pulled it out. (Owen also has Pica…)
Typically, we can replace the tube at home. But, when Owen has destroyed it, we can’t put it back in. And when he was going through them so quickly, the backup never had time to arrive. Which meant several trips to the ER.
If we catch the missing tube right away, it’s a simple process to put in the new one. But usually Owen removes the tube at night. This timing means we don’t notice it until morning. By then, the opening of his stoma has already started to close.
With a smaller opening, the normal tube won’t fit. So, in the emergency room, the doctors work to use different sized catheters to gently stretch the stoma in Owen’s stomach. It’s a slow process, and one we’ve unfortunately done many times.
With all of this tube trouble, we talked to Owen’s surgeon about replacing the tube with a different style. Instead of the more common Mic-Key tube, we went with a low-profile Bard.
This sits closer to the skin and is much harder for Owen to yank on. But, it’s also a rarer tube style which means it’s a special order. Owen was able to get his put in back in February this year.
He’s left it alone for such a long time.
The Missing Tube
But last Friday morning as I was changing Owen from his pajamas, I realized that his tube was gone. I found part of it in his pajama pants, but it was broken so I couldn’t reinstall it.
Since this style tube needs put in in a doctor’s office, and it’s considered surgery, we aren’t able to have a backup of this type at home.
So, a trip to the ER was in order.
And, we really thought we’d be heading back to Washington.
You see, we knew they’d put in a Mic-Key style tube, since the Bard is special order. And, we didn’t have a backup Mic-Key on hand. The hospital only gives one, and you have to call your medical supply company for the backup.
Even if we got on the phone that day, it would take several days for the tube to get to us. And being without a backup, with a style of tube that Owen pulls frequently, wasn’t a good idea. We also didn’t have any supplies for this style of tube. Everything we brought with us was for his Bard, and not compatible with a Mic-Key.
So, we prayed about it and knew that unless something unexpected happened, we’d be going home from the ER to pack up and clean the house we’re staying in so we could hit the road the next morning.
But, God had other plans. He provided marvelously!
The First ER
Let me say that we are not familiar at all with the medical facilities here in Southeastern Missouri. So after consulting with our insurance company about out of area coverage, we went to one of the closest hospitals, about an hour away. Owen’s stoma was closing quickly, and we knew we needed to get a catheter in it to begin the stretching process.
This ER was able to help do that. They got a small catheter in. Unfortunately, that is all they were able to do for Owen. Since it was a small hospital, they didn’t have any g-tubes in their inventory.
So, they transferred us up to the Children’s Hospital in St. Louis.
We drove Owen up there, and all the way in the car, we were talking about what we needed to get done to start our trip back home the next day.
Throughout this whole ordeal, we know we had friends and family praying for us. We’re so thankful for the people that God has brought into our lives who willingly pray for us!
The Children’s Hospital ER
Once we arrived and checked Owen in, we began the waiting process. It took a bit of time, but thankfully this ER had a Mic-Key style tube in Owen’s size.
The only problem? It wouldn’t fit. They tried to make it go, but his stoma was just too tight.
After consulting with the on-call surgery staff, and learning that we just use the tube for venting, not feeding, the team there decided to just insert a Mic-Key tube with a smaller diameter. They went with a 14 instead of an 18.
This tube went in perfectly. And, since they’d already tried to put the 18 in, they couldn’t use it again for another patient. So, they gave it to us.
We got sent home from the hospital with an extra Mic-Key tube. That was a huge provision from God. Especially since the 14 did a great job stretching the stoma, so when we got back to the Acres that night, we simply switched them out.
Owen now has the 18 installed, like he’s supposed to. And we have a smaller tube to use as an emergency backup.
And even better, each tube kit came with a couple of extensions and syringes. We had the supplies we needed to use this different style.
Thanks to God’s amazing provision, we are not currently on our way back home to Washington. We are still down here at Missionary Acres and planning on presenting our ministry in Illinois this coming Sunday.
We didn’t have to cancel!
And, we were able to order a Bard tube from our medical supplier. It’ll get shipped to our house in Washington, and my mom is planning on shipping it down here to us.
Then if Owen has any g-tube issues, we will have his correct one to put in instead.
It’s situations like these when we can sit back and clearly see God’s hand in our lives. Even when we’re in the middle of a difficult situation – in an unfamiliar hospital with doctors who have never seen Owen before – God provided more than we thought possible.
This is just the most recent way that God has provided while we were on deputation. You can read more about His provisions for us in this post:
God is so good.
And, we’d appreciate your prayers that Owen would leave the g-tube alone. As amazing as it is to see God work, we don’t want to spend any more time in the ER while we are here.