Please help in getting Bexley to CHOP. Thank you!!!

NEW STORY

Bexley has been accepted to CHOP, Children’s Hospital of Philadelphia. After he was referred up there, the GI team gathered all his records and went over every single thing he has had done, from tests, to surgery. They went over all his inpatient records, and so much more.

Within days of them receiving and going over all the records, they called Stephanie and said “we need to see him, asap!! So Bex has an appointment on November 12th.

Stephanie has been in touch with CHOP and Ronald McDonald House of Philadelphia. There is assistance, but the way it works, is Stephanie books her flights, tells them the cost, and then they see where they can get a grant from, to reimburse her the money. They do provide transportation from RMH to the hospital. But she will still have the expenses of meals, and anything Bexley might need while up there.

So, I’ve changed the story and the amount of support needed.

We appreciate all who have helped over these last 5.5 months.

Hopefully CHOP will have answers and hospital stays, tests, procedures etc will become a thing of the past.

please pray for answers and healing.

if you want to donate, but don’t want to go through this page, we also have Apple Pay, Venmo and PayPal.

again, thank you all

My name is Kim Burrowes, and I’ve started this gofundme for my grandson Bexley John Albert (and his mommy Stephanie).

Bexley was born premature on April 18, 2024. Since April, his mommy has not been able to return to work, because of Bexley's health.

At a month old, Bexley was life-flighted from our local hospital to the Advent Health Disney Pavilion in Orlando, where he spent a week in the PICU, because he was unable to keep any of his feeds down. His lab work was all over the place and he was showing signs of jaundice, and other health issues, including failure to thrive.

Upon his release, the long journey of finding a special pediatrician, began. Once found, Bexley began weekly appointments for weight and growth checks. He was still failing.

Appointments with specialists began.

This past Monday, July 29th, I drove Bexley, his mommy and his big sister Brynlee down to Nemours Children’s Hospital for an upper GI series that was supposed to be a same day procedure. That was not to be the case. The procedure set off alarm bells to his doctors and Bexley was admitted to have emergency surgery the next day, to fix a malrotation in his intestines. The surgery took just a little over 2 hours. When the surgeon came out, he explained that there wasn’t a malrotation as originally thought to be seen, but there was extra intestines. So everything was kind of moved around to make “room”.

Since surgery Bexley has been unable to keep any of his feeds down. He is in significant pain and distress. So he’s been on medications to help keep the pain under control, and has begun going through testing to find out what other issues are causing his health issues.

Yesterday he had a swallow test done, that is showing he is aspirating his feeds into his lungs and his feeds are also going into his nasal cavities.

His recent lab work is also showing kidney and liver function issues. So those issues are also being addressed.

Today, Friday August 2nd, the decision is going to be made on placing a NG feeding tube. This will be used to hopefully get Bexley to keep feeds down and help him start gaining weight. If this does help, the discussion will happen about putting in a JPEG feeding tube, as a more secure feeding system, that will allow him to eventually come home.

At this time, there is little to no discussion on when the possibility of Bexley coming home will be.

So this means mommy will be at his bedside at all times, still unable to return to work.

It means extra meals and necessities being needed.

It means this Mimi will be driving back and forth to Orlando as often as I can, to be a support system, to deliver clean clothes, necessities and bringing his big sister Brynlee back and forth so she can spend time with her Mommy and baby brother.

So I’ve started this gofundme in hopes that all our family, friends, coworkers, friends of friends, family of friends, might consider helping out, while Bexley is going through all these hospital stays and doctors appointments.

Any help will be greatly appreciated.

Thank you and God Bless