John's Journey

John's Journey John was born with an extremely rare neurogenetic disease, Type 2 Gaucher's Disease. John and his family need your prayers and support.
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John fell asleep tonight while nebulizing his meds! Isn't he just the cutest ever?? 🩵
08/02/2026

John fell asleep tonight while nebulizing his meds! Isn't he just the cutest ever?? 🩵

John gets to go home tonight! The ED did what they could, and they don't think the inpatient team can do anything for hi...
07/31/2026

John gets to go home tonight!

The ED did what they could, and they don't think the inpatient team can do anything for him for the asthma that we can't do at home.

All of John's labs look great. Our central line culture will take 72 hours, so we'll be called with those results.

All of our scans look good too. All negative viral panel.

And we see pulmonology early next week, so we can discuss next steps in person.

So thankful to take our happy baby home tonight. Please pray for no more oxygen problems, no asthma attacks, and that both our kids can get through this round of croup more easily from here on out.





John is back in the ED for more oxygen issues, asthma attacks that aren't responding properly to his normal albuterol tr...
07/30/2026

John is back in the ED for more oxygen issues, asthma attacks that aren't responding properly to his normal albuterol treatments, and another three-day recurrent low grade fever.





We don't know for sure what has hit our house, but both our children are down with fevers, horrible sounding coughs (sou...
07/29/2026

We don't know for sure what has hit our house, but both our children are down with fevers, horrible sounding coughs (sounds like croup), and congestion. John had an asthma attack tonight worse than usual too.

John was just discharged from Children's Mercy PICU this past Sunday afternoon. Please pray our kids get through this very easily, especially John as everything can turn life threatening for him so quickly. And it takes a lot to bring Mark down so we know he must be feeling terrible.

We do not want to be admitted again this soon.





John got his infusion today in office since our home nurse is on vacation this week! Featuring the bracelet that big bro...
07/28/2026

John got his infusion today in office since our home nurse is on vacation this week!

Featuring the bracelet that big brother made at Sibling Playgroup at our children's hospital. 🥰🩵

$2 Tuesday!

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Https://gofund.me/ec844d77

I cannot believe only 10 days until we leave for Dallas for John to see a new specialty! Please pray John remains well so we don't have to reschedule. 🙏🏻





PT this morning. This morning was very hard. John's medical anxiety is getting to the point where even those he loved an...
07/28/2026

PT this morning. This morning was very hard. John's medical anxiety is getting to the point where even those he loved and tolerated very well, he is no longer comfortable being very close to, and does not want to be touched by anyone but our immediate family. Its so heartbreaking.

Even with PT needing to be cut short due to agitation, John did well today! He got his legs all stretched out, and we'll see if we can get further next week.





John gets to go home today! Increasing the Gabapentin worked wonders. No pain meds needed at all last night!
07/26/2026

John gets to go home today!

Increasing the Gabapentin worked wonders. No pain meds needed at all last night!





Day 3. LOOK AT THIS SMILE! 😍The first half of today did not go well. Just like last night, very agitated, and meds did n...
07/26/2026

Day 3.

LOOK AT THIS SMILE! 😍

The first half of today did not go well. Just like last night, very agitated, and meds did not take.

John then slept for several hours, still agitated and crying. We realized that John has not had a bowel movement in the 3 days since we got here, and gave Lactulose and then several hours later a glycerin suppository.

Those worked, and John became SO much happier and his oxygen started holding better. So that seems to have been contributing to the pain issue quite a bit.

To target the general disease pain, Palliative increased our Gabapentin today, with the plan to also increase the Methadone tomorrow if John doesn't have a much better night.

Our PICU attending told us this morning that he will discharge tomorrow if John has a good night and no new problems come up.

Please pray for that. We want to go home.





Friends, please pray. This pain is absolutely unmanageable tonight. John is on a Precedex drip, methadone, morphine, and...
07/25/2026

Friends, please pray. This pain is absolutely unmanageable tonight.

John is on a Precedex drip, methadone, morphine, and overnight we added oxycodone back into the mix. All on top of his many regular scheduled meds, and all with no success.

John remains severely dystonic. He is biting his tongue and bleeding quite a bit. (Botox does not take full effect for two weeks.) What little sleep he has gotten has been agitated. His heart rate has not dropped below 140 tonight even while sleeping. He's crying whenever his nurse even touches him for assessments.

This is honestly not too much different than many of the nights we've experienced at home since January, and especially in the past 4 months. But its becoming unbearable. We don't get any kind of quality sleep at home either.

Our neurologist is out of the country for a couple of weeks, but a neuro consult is in to see if any of his partners can do anything about this, any temporary measure until he gets home. I will definitely be asking to increase clonazepam as at least one of those temporary measures. It might sedate him initially, but at this moment, pain free is my priority.

We've already thought about whether anesthesia is causing side effects, but ruled it out since we see this from John many days at home too.

I will consider any ideas. I know there are lots of mamas of special-needs kiddos following along for John. If you have any ideas at all, please comment or message.

And pray for relief for our baby.





Day 2. Besides John's procedures this morning, which got its own post, there really isn't much to tell. John has slept (...
07/25/2026

Day 2.

Besides John's procedures this morning, which got its own post, there really isn't much to tell.

John has slept (a restless, agitated sleep) most of the day, and when he isn't sleeping, he is in pain that we can't keep up with.

Continuing the Precedex drip, utilizing his opioids as needed, re-starting feeds with his regular formula, and a dose of Lactulose to help clear out what we can see is very backed up on x ray (and probably contributing to the pain) is the plan for tonight.

Keep praying for him. This pain is so, so hard.





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