Bryan’s Story

Site created on July 27, 2023

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting. If you are interested in donating to Bryan, please use Venmo (@Lauren-Curtin-14) or PayPal (lauren.michelle018@gmail.com).

Newest Update

Journal entry by Lauren Curtin

After a very long 197 days, Bryan was finally discharged from Dell Children's on April 16th. If you would have told us this a few weeks ago we would have thought you were crazy. Bryan had quite the journey after his Glenn surgery with multiple pneumothoraxes and a hemothorax. However, once he recovered from his last pneumo Bryan decided that it was time to go home. He started taking feeds like a champ and was showing much more stamina when it came to physical and occupational therapy, as well as being an all around happier baby.

To be honest, these last few weeks have been an absolute blur. We had so many different nurses and doctors in and out of Bryan's room discussing everything from follow up appointments to signs to look out for. Bryan will be seeing the IMPACT team at Dell Children's for a little while, his pediatrician, neurologist, hematologist, and home health for PT/OT/Speech Therapy. The IMPACT team is absolutely amazing. They go over Bryan's health as a whole, but specifically his heart health and how that impacts his development. Those appointments tend to last 3-4 hours.

Bryan was discharged on 1/4 liter of oxygen, NG tube feeds, and 11 medications. We are hoping to be off of the oxygen in the next month or so because his saturation levels are doing great. The NG tube feeds will take some time to wean off of. Right now Bryan will do tastes of purees and a little bit of milk by mouth through a straw (about 10 mLs). We are also starting to wean medications today. Hopefully we will be off of at least three medications by the end of June!

The team at Dell's was absolutely amazing and loved on our BryGuy so much when we weren't able to. They saw Bryan out with a bubble parade where we walked as a family through the CCU while they blew bubbles and played music. Our amazing music therapist sung Radioactive by Imagine Dragons at our request and it was beautiful. A lot of tears were shed because we were so happy to be leaving the hospital, but also sad to leave our medical family. We will definitely stay in touch and keep them all updated on Bryan's progress.

There is a program called Beads of Courage where Bryan received a bead every day he had certain things done/happen to him in the hospital. I thought it would be fun to tally them up and show you all.

Days of:

Line Placement/Removal - 22
TPN/NPO - 63
Dressing Changes/Skin Care - 41 (definitely missed some of these!)
Echocardiograms - 32
Emergencies - 7
Isolation Precautions/Fever - 20
IV Infusions - 146
Parent Education - 18
Nutrition & Diet Transitions - 83
Overnight Stay - 197
Pokes - 151
Cardiac Cath/Wound Care - 6
Respiratory Support - 182
Tests - 116
Therapies - 135
Tube/Catheter Placement/Removal - 40

Bryan is one heck of a fighter and we are so thankful for all of your support!

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