Day 631 - On Our Way to ER? Jacksonville?

Thursday, September 22nd, 2022

In the middle of the night James' required more oxygen. He has been okay at ⅛ (.125) for a while but now his saturation was dropping. Mom went through the checklist and tried all the things... Suctioning, sat him up while he was sleeping and did chest PT, checked the pulse oximeter, replaced the pulse ox probe, unplugging and replugging cords, turning equipment off and back on, ended up even getting the backup ventilator and switching ventilators to see if there was a difference. Nothing was helping. Mom ended up increasing his oxygen to ¼ (.75) and with that he was still only satting at 95%. 

In the morning James needed a lot of suctioning and we were pretty positive that this trach infection was starting to show itself again. About 2 weeks ago James showed similar symptoms (increased respiratory rate, increased heart rate, need for more oxygen, lung retractions, and increased secretions). We could tell that James's body was trying to fight it but this time he was letting us know he needed an antibiotic. Mom ended up needing to increase his oxygen up to 2½ liters. This was 20 times more often than he needed yesterday.

Mom gave Dad a heads up that she was concerned and that she thought we possibly should be heading to the ER. Dad decided to call the pediatrician's office to see if we could get in same day so they could do a sputum culture. But Mom knew what would happen because we've tried this a few times before. The pediatrician actually told us just to call 911 and get an ambulance. Well we knew that was not necessary. It is unfortunate and that we are never seen by our pediatrician when James is sick. They don't trust the parents and their knowledge and just push us off to the ER. The fact is James needs an antibiotic and in order to get that antibiotic he needs sputum culture done to see what kind of bacteria is growing. Trach infections are very common when you have a trach! Bringing James to the ER would not be ideal since this time of year it is a cesspool of different flus. It is not recommended to bring healthy children to the ER, unless it is a true emergency. On top of possibly catching RSV or covid James would be required to get an unnecessary IV pokes and chest x-rays.

So Mom contacted the pulmonologist office instead and they were able to get us into a same day "sick appointment". The plan was to have the car packed, go to the pulmonologist appointment, get a prescription for an antibiotic, and get on the road to Jacksonville. Essentially that is what happened. Thank goodness for our pulmonologist! 

At our pulmonologist appointment we let him know that James had been doing great on his trials off the vent and that we suspected this was just a trach infection. He agreed. They did a sputum culture 🧫 and we drove those results over to the hospital's children's lab. It would be several days before we would get results but they prescribed Cipro immediately. 

P.S. You can email James your love and support as often as you’d like. Mom and Dad read these email to James as they come in. We all love them! JamesWestonAbramowitz@gmail.com