Gavin was sent to the OR this morning to be extubated (to remove the breathing tube) and he did well, but when he returned to the PICU, Gavin started to have the stridor breathing. He was breathing ok, but beginning to show signs of difficulty so the ENT and ICU doctors decided (for pre-cautionary measures) to re-intubate him again and wait until Tuesday to be re-examined by an ENT specialist surgeon. Gavin’s lungs are great and healthy and there are no inflammation around the tissue surrounding his airways so everything looks good; however, when doctors removed the tube and as Gavin was weaning off from his sedation meds, his muscles around the airway began to tighten causing dynamic upper airway obstruction. This is the mystery part because all of these are not symptoms of Tay-Sachs Disease. Gavin is doing fine at the moment back at the PICU so we will know more once he is seen on Tuesday as to where we go from here. We miss Audrey Bella so much already, but she is with my parents and sister who all have been so supportive and helpful so she is in good hands. Audrey will be heading to Vegas to stay with my parents for a while until we return to San Diego.
Gavin desperately needs your prayers so please continue to do so. Thank you all for checking.

-Jan

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