It was a long day at the hospital. Our good friends, Joan and Wela from Virginia came by last night to see Gavin and to take us out for a short break from the hospital. It really helps to have friends close by considering that we are so far away from home. Gavin is resting comfortably in the PICU, but I can tell he is so uncomfortable being intubated- who wouldn’t be right? He is still heavily sedated on morphine and versed so that he is completely still while intubated and his last dose of anti biotics will be tomorrow. I have been doing my research about Botox as a cause for upper airway obstruction because this is what my gut is telling me could be the possible cause. Gavin got Botox injections in the salivary glands to help minimize secretions on June 21st so this may be a possible side effect, but very unknown with kids who have Tay Sachs Disease. It’s sooooooo tough because we want to do everything to help Gavin thrive, but nothing is definitive with these kids with TSD; everything is trial and error. It’s so tough seeing our sweet boy hooked to all these machines, but I know he is a fighter, a warrior, and a big reminder to hold on to all the hope. Even if Gavin cannot necessarily process what he sees or hears, I know his sense is so powerful- he knows when we are in the room right next to him as his heart rate increases when we leave the PICU room. We meet with the medical team from Children’s Hospital and the NIH and will also include Gavin’s San Diego doctors via tele conference later this afternoon to discuss all steps, protocol, and options on what will happen tomorrow. Gosh this is sooooooo tough, sometimes you just want to be a robot for a moment, but then I snap back and remind myself to be strong for Gavin. I always have to remind the doctors, don’t default to Gavin’s diagnosis because when there is life, there is always-always hope. Hang in there my son! More updates to come. Pls never stop praying for Gavin.
