Luke the Laryngomalacia at CHOP and MEEI (Boston)

Hi, my name is Danielle and my son Luke is currently battling severe laryngomalacia. He was hospitalized at CHOP (Children's Hospital of Philadelphia) after an outpatient appointment for failure to thrive and was there from 4/28 until 5/22. Once he was hospitalized, we found out he was silently aspirating his formula causing him to battle light pneumonia during his stay. We decided then to place an NG tube, but to give him small amounts of formula a day still by mouth so he did not lose his oral sensation. After a short stint in the ICU due to a high blood gas level, Luke was approved for surgery on 5/15/2023. He received a Supraglattoplasty from one of CHOP's best ENTs Dr. Ruiz. He was hospitalized for another week during this admission to see if the Supra solved his aspirations enough that he could return home with no feeding tube. Unfortunately, that was not the case. On top of the issues that Luke has with Laryngomalacia/aspirating/FTT, he also has a milk protein allergy. This requires special formula that his insurance has denied. We are unfortunately over the income limit for Medicaid, so we are out of pocket when we do not receive kind donations. To give an idea, the formula is close to $60/can and he eats a can in 2 days. This past Friday, we had to replace the NG Tube. When trying to replace the tube, blood vessels were popped and he bled from his nose and mouth. The next morning, I noticed an increase in coughing as well as heavy chest retractions. We took him to urgent care, but were immediately taken to CHOP. This is quite the commute as we live in Toms River, NJ. He is now hospitalized indefinitely as we run more tests (swallow study, scopes, ultrasounds), to see why he is still having heavy retractions. In this economy, Luke’s diagnosis, hospitalizations, supplies, and formula have caused us financial stress, especially with the cost of childcare for my other two children, gas, tolls, meals, hospital stays when we cannot stay in the room (it is hard and not recommended when he has roommates). As well, we have started to receive mounting medical bills. The money raised in this fundraiser will go towards Luke's medical bills, childcare costs for our other two children so I can visit Luke, meals, gas, tolls, etc. Thank you so much for your help and for reading this far.