The meeting with the NIH, Children’s Hospital and SD Kaiser medical team went well. It was a bit intimidating and emotional, but Ferd and I were prepared with all of our questions. On Friday, if the doctors feel Gavin is safe to be extubated, they will do this in the PICU and if all goes well (which we pray so hard will) and that Gavin’s O2 stats, breathing and heart rate remain stable, then we can all go home. Gavin will still have to be monitored for at least 3 to 5 days or until it is declared safe for him to travel. If Gavin begins to desaturate in his oxygen levels and begins to show signs of struggle breathing, then the next option would be a tracheostomy which was discussed that it could be temporary- if it was a side effect of the Botox, the good news is that it is temporary until the side effects wear out. If Gavin will undergo the tracheostomy surgery in DC, then we would have to stay here for another 3 weeks at the very earliest and be medically transported. I asked if he can just be intubated until the botox wears off, but that is highly risky because Gavin would have to continue to be heavily sedated and the Botox could wear off within 2 to 3 months at the very least and plus there is a high risk of developing an infection-definitely a bad option for Gavin. I also contacted Allergan, the makers of Botox, to see if there is a reversal remedy, but apparently there is none for this situation. So there, we don’t have many good options at this point, but to pray so hard that all will go well when Gavin is extubated and that a tracheostomy (even if temporary) is not necessary. Thank you all for praying very hard for our sweet boy. More updates to come.

Advertisements