February 18, 2023 - September 17, 2024
February 18, 2023
Hello there! Thanks for visiting Desté's Caring Bridge site. Events of the last few days stunned and knocked the wind out of us, but the love and prayers of friends all over the world continue to buoy us up, encourage us, and warm our hearts. Thank you. We are creating this site in the hopes that we can keep you all better updated as to Desté's situation. It's pretty much impossible
February 18, 2023
The LORD is my rock, my fortress, and my savior; my God is my rock, in whom I find protection. He is my shield, the power that saves me, and my place of safety.
Well, hello there! Thanks for coming in to check on Desté. If you got here, then you know our son Desté is in the hospital. But you may be wondering what happened to get him here.
Here is the backstory:
About 2 weeks ago, Deste woke up in the night very short of breath, coughing constantly, and with a super fast heartbeat. He felt terrible, like he might die. He came and woke us up and Tim listened to his respirations, we took his temp, gave him cough meds, and all those kinds of things. After a while, he felt well enough to sit in our recliner chair for the rest of the night, where he dozed off and on. This continued for a few days and then he started saying how badly his stomach hurt. He felt sharp pains near the bottom of his abdomen - the pain so intense that he couldn't really sit down or lie down, but had to more like stay in a leaned forward position and keep his head near his knees. Then he started vomiting and couldn't keep the smallest thing down - not even a sip of water. We took him to Urgent Care and were told by some super amazing nurses there that he needed to go to the hospital. Once at the hospital, he was evaluated head to toe until the doctor found that the problem was his heart, which was "super enlarged".
(Fun fact: According to SCIENCE™, it's only good to have a triple enlarged heart if you are the Grinch in The Grinch Who Stole Christmas.)
At this point, the hospital folks arranged an ambulance ride for Desté and his mom and took us to Methodist Children's Hospital in San Antonio where an amazing team of doctors is treating him in the pediatric ICU for Dilated Cardiomyopathy. Deste will be here for at least another week. And we don't know what things will look like after that. But like the saying goes,
"We don't know what the future holds, but we know Who holds the future."
"Who shall separate us from the love of Christ? Shall trouble or hardship or persecution or famine or nakedness or danger or sword? No, in all these things we are more than conquerors through him who loved us. 38 For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, 39 neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord." - from Romans 8
I set this up because I'm not able to update everyone and I'm hoping this will be a more efficient way to keep y'all updated and to request prayer. We do know so many are praying for Deste and we've already seen some amazing answers. God has made it clear that He is with us and He isn't going anywhere. We are in a pretty big storm right now, but it comforts us knowing He is in the boat with us.
Hopefully, I can get Tim to give a doctor report with more details about Deste's situation later. Thank you all for your love, prayers, and concern. More soon.
Love,
Linda
p.s. Many have asked how they can help. First and mostly, please pray for God to heal Deste's heart. We'd love to see a miracle! We will trust and accept whatever comes - good or "bad" - because we know our Heavenly Father loves us and is working for our good - but we are ASKING for a miracle, to have his heart return to a normal size and for full heart function to return. Hey, no harm in asking, right?
Secondly, and way less importantly - we get a tad hungry around here and as you all know, restaurant eating when out of town gets expensive. So there are links in the "how to help" section if you want to give to our eating out fund while we are here. Thanks so much to everyone.
February 18, 2023
February 18, 2023
February 18, 2023
February 19, 2023
February 19, 2023
Deste, please know that Uncle Bobby, Aunt Sally, and your cousins are praying for you and your family! We are so grateful for your life, and we trust that God will use this trial for his good purposes.
I’ve been praying for y’all from 1 Peter 1:6-7. But I think it’s important to see the context of those verses. (The same goes for Romans 8:28, which by itself sounds like a good luck wish. The “good” in that verse is explained as becoming more like Christ Jesus, being certain that nothing can separate us from the love of God.)
“ Praise be to the God and Father of our Lord Jesus Christ! In his great mercy he has given us new birth into a living hope through the resurrection of Jesus Christ from the dead, and into an inheritance that can never perish, spoil or fade. This inheritance is kept in heaven for you, who through faith are shielded by God’s power until the coming of the salvation that is ready to be revealed in the last time. In all this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. These have come so that the proven genuineness of your faith—of greater worth than gold, which perishes even though refined by fire—may result in praise, glory and honor when Jesus Christ is revealed. Though you have not seen him, you love him; and even though you do not see him now, you believe in him and are filled with an inexpressible and glorious joy, for you are receiving the end result of your faith, the salvation of your souls.” 1 Peter 1:3-9
John 16:33
Much love & hugs ♥️
Love you all! The Johnstons are praying for sweet Deste. He will prevail.
Psalm 63:6-8 “On my bed I remember you; I think of you through the watches of the night. Because you are my help, I sing in the shadow of your wings. I cling to you; your right hand upholds me.”
Please know Deste is being lifted up in prayer and y’all are deeply loved.
In fact, a local friend of mine , Alison Broussard, sings this song beautifully. You might find it on Google.
February 20, 2023
Prayers for comfort, peace, strength and healing.
February 20, 2023
February 20, 2023
https://youtu.be/ZOBIPb-6PTc
February 21, 2023
Good morning, friends and family reading these updates! I do not have an update about Kizi for you yet. I'm still quarantined back at the Ronald McDonald house after my bout with the stomach bug. I feel sure I'll have some news to post soon. Meanwhile, thank you for your prayers for Desté.
Dogs:
We do have one "need" that has popped up. Since we will be here for another 2 weeks or so...our dogs are getting a bit lonely. We are blessed with amazing neighbors who have been checking in on them twice a day and feeding them, etc. But one of them especially, our little 19 year old terrier mix named Molly, needs a bit more people time. So we are looking for a couple week foster home who could take her in. The ideal family would be a homeschool family who is home a lot and who doesn't have other dogs (or who has dogs who would not mind a new one butting into their lives) but who has always wanted one. (In other words, the kids and mom would love on her and dote on her a lot - she is, after all, "the Queen", as we call her.) She is blind in one eye and kind of deaf. And we don't think she sees all that well in the other eye, either. She is actually pretty ugly and funny looking (Desté calls her "rat dog"), but she thinks she is beautiful, so please do not tell her any different! She is skinny and likes to sleep on pillows or very cushiony dog beds - preferably right next to someone on a couch or right next to the people bed on her own little dog bed pillow (you can use ours). She gets kind of smelly sometimes because her favorite past-time is to roll in gross smelling things. But she loves getting bathed in the kitchen sink if people think she smells too badly.
The other ideal foster home would be an elderly person who is home a lot, maybe watching t.v. and just wanting a companion. Most of Molly's days are spent sleeping, but she *needs* (wants) a person to sleep nearby.
We have an offer already for our other crazy-fun-boisterous-overly friendly German Shepherd. But for Molly, I'm wanting/needing to find a home where she will be doted on and get to be the "star". If you think you may be able to do this, please comment below. I know this is kind of a big ask.
These verses comforted me this morning from my room at McDonald House, wishing I could be with Desté:
The LORD is my rock, my fortress, and my savior; my God is my rock, in whom I find protection. He is my shield, the power that saves me, and my place of safety. Psalm 18:2
Lamentations 3:20-26
20I will never forget this awful time,
as I grieve over my loss.
21Yet I still dare to hope
when I remember this:
22The faithful love of the LORD never ends!b
His mercies never cease.
23Great is his faithfulness;
his mercies begin afresh each morning.
24I say to myself, “The LORD is my inheritance;
therefore, I will hope in him!”
25The LORD is good to those who depend on him,
to those who search for him.
26So it is good to wait quietly
for salvation from the LORD.
February 28, 2023
- Complete healing of Deste’s heart.
- For God to be a rock and an ever-present help and friend to and for Deste.
- Wisdom and the best outcomes on all procedures for his entire medical team.
- Some kind of sign that Deste will see that God is here with him right now, that He sees, He knows, He cares, and He is still in control.
February 28, 2023
Sorry for the delayed update. The last 24 hours have been a lot.
Here is the 10 am update from Dad/Dr. Tim:
A medical air team flew Deste and Linda to Houston last night. We arrived at Texas Children's Hospital in the Texas Medical Center about 11 pm.
Not much rest last night, getting everything shifted over and lots of talking/noise.
The intensivist team came early to explain what they’re thinking and the next steps. Lovely folks, caring and articulate and patiently discussing and taking questions. Huge team here, including fellows in training.
They are concerned that he is requiring so much epinephrine to maintain his heart function and would like to gather more specific measurements of his cardiac function.
They have placed an arterial line and have technology to indirectly measure his actual cardiac output and other parameters which influence that (like how much his peripheral arteries are contracted which causes resistance to blood flow).
Also, they’re doing another Echocardiogram which will look more specifically at his valves and function.
After gathering that information they will try to maximize his heart function with other meds in order to get off the epinephrine.
Once again they have brought up the possibility of mechanical cardiac assistance. They’re not suggesting transplant but something that will improve cardiac function temporarily and buy time to determine whether his heart may recover enough to manage just with cardiac meds.
One such device is called Impella.
So, kinda disappointing to consider how severe his current function but so very grateful for the expert and compassionate care Deste is receiving. Also grateful for Deste’s attitude- he has remained collected and amazingly patient with everyone and everything.
Just praying …
for his healing,
strength to endure this journey,
and for hope.
3:42 pm
Tim and I were just updated by one of Deste's doctors - wow, he has a LOT of doctors. She seems to be such a wonderful person in general and also seems crazy-smart and quite invested in her quest to help Deste. I guess they make everyone feel this special and important, but honestly, after listening to her talk, it felt like Deste was somehow THE MOST important person to her in the world, wide world, which is a really nice feeling for a mom to get from her kid's doctor. Anyway, the news she shared wasn't what we wanted to hear, no matter how nicely she worded it. I'll let Tim summarize for you below.
Dad's/Dr. Tim's report:
Okay…
Some kinda bad news. After carefully observing Deste this morning our cardiologist has called an urgent conference with the Heart Center team.
What they are seeing is two things- one of his valves (mitral) is leaking badly and on top of that, with his cardiomyopathy his heart is barely compensating with a very fast rate with only the slightest stress. So despite adjusting his meds they haven’t seen enough improvement and are recommending this urgent meeting today to consider whether surgical intervention is needed. Something is needed to assist the pumping function of the heart and sounds like it will only be a matter of which one.
On a lighter note.....
The second photo we posted with Deste drinking a specialty root beer as a shout out to his friends, Olivia and Addison Wrase, who sent his favorite drink to him just before we headed out to Houston. (And thanks to Mom, Elizabeth, for getting this to him as well.) The root beer provided much needed "sustenance" after many hours of nothing to eat or drink before the plane ride. Thanks, girls!
This passage from the Old Testament prophet Habakkuk came to mind last night and fits even more today after the difficult news we heard today:
Though the fig tree does not bud
and there are no grapes on the vines,
though the olive crop fails
and the fields produce no food,
though there are no sheep in the pen
and no cattle in the stalls,
yet I will rejoice in the Lord,
I will be joyful in God my Savior.
The Sovereign Lord is my strength;
he makes my feet like the feet of a deer,
he enables me to tread on the heights.
Habakkuk 3:17-19
February 21, 2023
February 27, 2023
February 27, 2023
7 “Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. 8 For everyone who asks receives; the one who seeks finds; and to the one who knocks, the door will be opened.
9 “Which of you, if your son asks for bread, will give him a stone? 10 Or if he asks for a fish, will give him a snake? 11 If you, then, though you are evil, know how to give good gifts to your children, how much more will your Father in heaven give good gifts to those who ask him!
*******
February 26, 2023
February 26, 2023
I know who stands behind
The God of angel armies
Is always by my side
The one who reigns forever
He is a friend of mine
The God of angel armies
Is always by my side.
You hold the whole world in Your hands
I'm holding on to Your promises
You are faithful
You are faithful
You are faithful
I know who goes before me
I know who stands behind me
The God of angel armies
Is always by my side
The one who reigns forever
He is a friend of mine.
February 25, 2023
Deste's doctor team here has decided they'd like for him to transfer to Texas Children's Hospital in the Houston Medical Center area. He has been "accepted" there, so we are now just waiting until a bed in their ICU opens up. The team here has been GREAT and we are so thankful, but evidently, Deste's situation complex and uncommon enough that the SA team feels he could be better helped by the team at Texas Children's.
Currently, Deste is resting comfortably - sleeping a lot! - in his bed in his San Antonio hospital room.
We will keep you posted when we hear more news. Thank you again for your love, your care, and most of all, for your prayers that God will completely restore Deste's heart to perfect working condition!
February 24, 2023
February 23, 2023
Today was a long, hard day. First, during morning rounds, we heard more bad news about oxygen stats in brain and kidneys and output and I don’t even know what all they said anymore.
Then around 10:30 am, Deste had his 3rd or 4th echocardiogram in a week. This one was much longer. I watched it all but wasn’t sure what I was seeing.
Next, about noon, they came to get Deste to take him for an MRI of his heart. Getting him there was a whole thing. Pushing the bed and his medicine pole all over the place and just barely squeeing all that into the surprisingly narrow amd short elevator (We jokeingly wondered if they knew theyd be transporting patients in beds when they considered the elevator size???). It took about 40 minutes just to get him there and then the set up began for the test - another 20-30 minutes. Then the test itself was about 110 minutes long. In the middle of it, Deste pressed the emergency button, saying he felt nauseous. They were able to stop the mri somehow amd get him out of the tube just in time for him to throw up. Gave him some antiemetic (zofran) and after a while they were able to resume the test. He got back to his room, exhausted, about 4 pm or so. This kid is a trooper.
Maybe tomorrow or the next day we will hear news about these tests.
I am discouraged and tired.
i was texting a friend last night who I’d forgotten to tell about Deste. She had heard thru the grapevine. After talking about things a while, this is what I wrote. I don’t “feel” it now but I still KNOW it is true, and i will copy paste it here so last night me cn remind tonight me. And so last night me can remind anyone else.
My friend Isabel had asked me how Deste was doing, and this is what I wrote, just 24 hours ago. Its amazing how frail our human emotions are! One night we are strong and have faith, the next we are barely hanging on.
“ It doesnt look good, to be honest. But The same God who raised Jesus from the dead, who raised Lazarus from the dead, who healed the blind, who stopped the woman's bleeding, who got Zaccheus to stop being a jerk and stealing people's money 😂, who parted the Red Sea, who saved Noah and his family in the flood, who shut the lions' mouths for Daniel.....that is Deste's God. That is our God. So we know He can heal Deste.”
Will you stand in the gap for us and pray your heart out for our Deste? Please comment and let me know if you prayed for him today and will pray tomorrow. Thanks.
February 22, 2023
Deste's doctors have ordered an MRI of his heart. It is scheduled for sometime this afternoon. For medical reasons I don't understand, they want to put him under with anesthesia for the MRI. It's not due to anxiety or any concern of noncompliance as Deste has been a model patient and mature beyond his years throughout this ordeal. So, I'm really clueless as to why they'd want him under anesthesia for a painless procedure like this. It has something to do with his heart - that's all I know.
We had a "good" night's sleep. In fact, Deste is sleeping now. His numbers are pretty low (not in a good way), but the nurses said they've told the doctors and they are "on it". I'll know more after morning rounds when I see doctors.
Thanks for praying for our son!
Lord, please help Deste's heart.
Cool Happenings
I want to write down these things mainly so I will not forget them, but to share them with you, as well. As the days pass, the sobering reality of Deste's situation is starting to settle in - along with the knowledge that life may not be what we had dreamed it would be for him. This is not said to complain or to throw a pity party for ourselves or for him. But just to say, we are beginning to feel the weight of it all.
At times like these, we need to see Jesus even more than we do on sunnier days. Or maybe that isn't true. We need to see Him no matter what kind of day we are having. And maybe the "good" days are spiritually way more dangerous for us, as we don't sense our urgent need of his strength, his kindness, or his love towards and for us. But wow, right now, we know we need Jesus. We need him desperately. And of course, we always have and always will - but it is only in these dark times when our spiritual eyes seem to be able to actually see our need.
So, I want to write down these "cool happenings" I've experienced the last few days - so that on sunnier days, I won't forget the ways that Jesus showed up for us during this trial.
Cool Happening #1: This happened the first day we knew something was wrong with Deste's heart, almost from the moment the doctor came in and said, "We found something on the CT. It isn't his appendix or his gall bladder - it's his heart. It is super large". As soon as she said that, a song I used to sing in Young Life back in the 1980s - a song I haven't thought about in absolutely AGES - started "playing" in my head. The words are:
"He didn't bring us this far, to leave us.
He didn't teach us to swim, to let us drown.
He didn't build his home in us, to move away.
He didn't lift us up, to let us down."
Gosh, I hadn't thought of that song in decades, and here it was, playing in my head. It continued to "play" in my head for HOURS and hours, almost on a loop. It was almost annoying - that's how much I kept hearing the song! haha! Well, about 5 or 6 hours later, I was on the phone with some good friends, Dave and Angie, telling them I was on my way to Methodist Children's hospital with Deste, riding in an ambulance. Dave asked if he could pray for us and of course I said yes.
His first words were, "Father, we know you didn't bring Deste this far to leave him."
His next words were, "Father, will you reassure Linda and Tim of this?"
I almost jumped out of my skin! Will he reassure us? HE JUST DID! Dave prayed the exact words I'd been hearing in my head for hours: He didn't bring us this far to leave us. And of course Dave couldn't have known about the song in my head. But God did.
Cool Happening #2:
At the hospital, the nurses were trying to get a "PIC" line in so Deste could get his meds and multiple daily blood draws done. However, they were having pretty much difficulty getting one inserted. They had to use ultrasound guidance to find a vein, and all that jazz. Meanwhile, all those sticks hurt and he had just gone through the same thing at the first hospital! Because it needs to be a sterile procedure, they asked us to leave when inserting the PIC line, so we went down to the cafeteria and they promised to let us know when they were done. After 1.5 hours, we gave up on waiting and just returned to his room. In the hall outside, we discovered they had been trying the whole time but still had not gotten the PIC line in. I could see Deste's face through the window. Ugh. I said, "Y'all, we gotta pray right now for God to guide those nurses to the right vein. Bow your heads now and let's pray." So, we prayed just a very simple prayer, "Dear God, please let them get in - guide them to the right vein right now, Lord. Amen." And just like that, about 20 seconds after saying Amen, the triumphant nurses exited his room with a "We got it!" I just looked up and said, "Thank you, God. Thank you."
Cool Happening #3:
This afternoon, I took an Uber to the nearest Target to get some things for Deste. On the way over, the Uber driver asked me who I'd been visiting in the hospital (he picked me up there) and I told him we were staying there with our son who was in the ICU with heart problems. The guy had just parked his car. He turned around and looked at me and said, "God cares, you know." I said, "I know." He said, "Please give me his name. God knows it already, but I'd like to pray for him by name, if that's okay."
It wasn't one of those casual "I'll pray for him" moments - it was a serious, intense, focused type statement. Like, I don't know if I'll ever hear from this person again, but I know we have another person praying for Deste - and he also said he'd be putting him on some prayer lists. So, how often do you get an Uber driver like that, one with such focus and boldness for God?
Cool Happening #4:
Hard to believe, but once I'd finished at Target, I used my Uber app again to get a ride back to the hospital. A different driver showed up. Same thing happened. He asked who I was going to see at the hospital since that was my destination. I told him and he said, "Oh wow, I know what that's like. My son had cancer three years ago. He was only 20. He's doing better now, though, praise the Lord. That was rough. To see your child sick like that, it's rough." I agreed. Then he said, "You know God cares about your son, right? He's not going to leave him."
(Gulp.)
"Yes, I know.", I said. "Thanks for the reminder, though."
"It's easy to forget when times get tough, but don't forget, ya hear?"
"I won't", I said.
Then he offered me some of the gospel tracts he had posted in little holder things on the backseat of his car - he had them in English and Spanish. He used to be a full time trucker and turns out, they give thousands of these tracts out at truck stops all across the country. 6,000 truckers hand them out on their trips. Pretty inspiring. The man is a member of a prayer chain group with thousands of members and asked me to please write down Deste's name so he could add him to the prayer list of this group.
Again - how many times do you get an Uber driver with this kind of a focused heart on God? And I got two in one afternoon! It takes too much faith for me to believe that was a coincidence. I believe God brought those Uber drivers to me. As George Strait sings, "I saw God today".
These are just four of the ways I've seen God work in our situation so far. I'm trying to keep believing that He will show us Himself many more times - and that He will show Himself, His Wonderful Self, to many people we love and many we don't even know through this whole ordeal. And I'm praying that He will heal our precious son, Desté.
Comments
Post a Comment