Wow, we’ve been here for almost a month and while our trip did not turn out as planned, all we could do is pray and hope for the best and make “lemonades out of lemons.” While Gavin remains in the PICU, Ferd and I take our occasional break from the hospital with friends or exploring the city of DC and parts of Maryland and Virginia which are all close by (a highly different and unique geography than what we are use to in California, but nonetheless beautiful). Eating out everyday, walking about in the city and taking the Metro and DC cabs can be quite an adventure and can add up. Anyhow, the sleep study went fine, but because Gavin was not completely asleep, the reading was not entirely accurate, but accurate enough to determine that Gavin would benefit from a BiPAP device as the readings show signs of obstructive sleep apnea. So moving forward, we had a meeting this afternoon with the ICU team to discuss next steps for medical transport which they feel will take place sometime this week. They feel that Gavin continues to do well and is able to bounce back quickly after an oxygen disaturation, but told us their next recommendation- Ferd and I’s jaws dropped. The ICU doctors feel that for pre-cautionary measures and for the safety of Gavin, it would be best for Gavin to be re-intubated (not that he needs to at present, but as an “in case” he may have an obstructive upper airway during the flight). Ferd and I were so torn because Gavin is finally back to his normal baseline; it would also mean Gavin would need to be sedated again. It was indeed a stressful moment. After making several phone calls for different opinions, doing a little research, and listening to our gut instinct, we spoke to the ICU attending physician and told him that we are leaning more towards Gavin flying without being intubated. I feel that our son is really stronger than he appears to be and we would feel comfortable with Gavin flying with a medical transport team consisting of an ICU doctor, transport nurse and respiratory technician along with oxygen and a BiPAP device if needed. It’s understandable that everyone wants to prepare for a worst case scenario for Gavin and no one wants to be liable in case anything bad were to happen, but we know our son and instinctively know he will make this flight without the need for re-intubation. We are going to have another big meeting on Tuesday afternoon with the ICU medical team, Pulmonary and the SD medical team via phone conference to finalize Gavin’s medical transport plans. I know some will frown upon our decision (and they all know it is a very very tough decision) but we are going to be firm with our decision (unless some drastic change were to occur) because after all, we want to do everything possible for Gavin to thrive through less invasive measures. Despite it all, making medical decisions for your child is never easy for a parent. We ask all of you to please continue to pray for Gavin and that his journey home be safe and sound without any need for intubation. The journey never gets easy, but God never leaves us through the journey. Hang in there my son, we should be home very soon.
