After a very long and HEATED discussion with all participating medical team members at the meeting Tuesday afternoon, Ferd and I were left with no choice, but to agree with the medical recommendation to re-intubate Gavin during the medical transport flight back to San Diego. Even though we as parents feel it would be safe for Gavin to fly without the need for a breathing tube, all the doctors at the meeting felt it would put Gavin at severe risk considering his obstructive upper airway which worsened either from the infection or side effects of Botox or a combination of both. It was very stressful. We felt almost attacked as the doctors were set on their
recommendation. If we did not agree with the intubation, the other alternative would be for Gavin to stay at Children’s Hospital in DC until he would be discharged (could be up to 2 additional weeks) and then be transported on our own via commercial air with no medical support so there, it did not leave us with any choice, but to agree or we would not be able to take Gavin home sooner. It was very stressful, emotional and tiring and I know that the ICU team wanted to transport Gavin through the safest possible method, but it was frustrating to see doctors (especially new ones that we have never ever met before) making their recommendations as if they know Gavin more than Ferd or I. Anyway, we didn’t have any energy to fight even if we feel that Gavin did not need intubation and though I can possibly make a case for patient rights and get an advocate, it would delay us from coming home. So Finally, Ferd will be arriving on Wednesday night in San Diego so that one of us is already there, and on Thursday morning, the San Diego medical transport team will be arriving and preparing for Gavin’s transport back home. The process will take long as the team will also confer with the ICU team. It’s still uncertain as of now whether I can fly with Gavin or not, but I hope to find out later this afternoon. The carrier that will be transporting Gavin will be a medical jet with a critical transport team consisting of an
anesthesiologist, respiratory tech, and registered nurse. Gavin will then arrive at Rady Children’s Hospital in San Diego by Thursday late afternoon. If all goes well, Gavin will be extubated that same day or early Friday morning and will stay in the PICU until he is discharged. Hopefully Gavin will not be in the PICU very long. We can’t wait to see Audrey Bella as well. Please continue to pray for Gavin and his safe journey home. More updates to come.