Help Lenny, Kendall and Their Newborn Son, Josiah

Click here for the update blog on Josiah's progress.

Here's a message from Lenny & Kendall.

“The steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness. ‘The Lord is my portion,’ says my soul, ‘therefore I will hope in him.’”

Lamentations 3:22-25

As most of you reading this probably already know, our son, Josiah Ray, was born at the end of April. Within a couple hours of his birth, he was admitted to the NICU because his blood sugar was too low to read and he was not responding to any of their attempts to increase it. 5 days later, he was transferred to Primary Children’s NICU because his blood sugar was still not responding as they expected and he needed access to more advanced medications and specialists that were not available at the first NICU.

Over the last several weeks, the NICU and endocrinology teams have been working together to try to understand why his blood sugar has continued to be so unstable and to develop a treatment plan that is effective at keeping his blood sugar up both in and out of the hospital.

He’s been diagnosed with what’s called hyperinsulinemia. In short, his pancreas is producing way too much insulin and causing his blood sugar to tank, often with no predictability. As a result, he’s needed to have continuous feedings through an NG tube and a constant drip of what’s basically high concentration sugar water through a central PICC line to keep his blood sugar up which is obviously not sustainable at home. Any attempts they’ve made to wean him off the IV sugar water in conjunction with condensing his feeds to be over a shorter period of time have been unsuccessful.

It seems that we know what is happening in his body but we don’t yet understand why it’s happening. This is apparently very rare and abnormal; a majority of the doctors we’ve seen here have only ever seen one or two patients with something like this in their career, if that.

We’re at the point now where they’ve exhausted all of their testing, imaging, and medication options and capabilities here at Primary Children’s to better understand why this is happening and how to treat it, which brings us to the most recent update from yesterday.

He will be transferred to the Children’s Hospital of Philadelphia (CHOP) where they have specialists in hyperinsulinemia who can utilize specialty imaging, medications, and surgeons as necessary to understand why this is happening and how to best treat it. We are waiting on insurance approval and a bed to open up there but all of the things are in motion now. He’ll be flown via life flight airplane. Lenny and I both get to accompany him which is a huge blessing. We don’t have a definite timeline right now but we’re praying that he can be transferred early next week sometime, hopefully Tuesday or Wednesday. We’re not sure what to expect when we get there but we’ll post another update once we know more and as we’re able.

God has been so good to our family and we find great peace in knowing that He is in control. Our prayer is that He is glorified and that His will be done. Please continue to pray with us that Philadelphia would bring more answers and that Josiah would be able to come home with us soon.

Lenny and I feel so blessed to have the amazing support system we do through this. We are humbled to know that there are so many friends and family around the country who are praying for him and who love and care for our family. Please feel free to share this as you’d like. We will do our best to post updates as we have them.

Some of you may have also heard that Lenny’s dad, Ray, passed away unexpectedly a couple weeks ago. Please pray for him and his family as they grieve. We are so grateful that Josiah got to meet his grandpa before he passed and that they share a name.

We love you all and are grateful for your support.

Love,

Lenny, Kendall, and Josiah

https://josiahupdates.wordpress.com/