Day 9 @ Children’s Hospital in DC

It’s getting very complicated right now. The ENT and ICU team have decided to hold off on extubating Gavin until Friday to finish the course of anti-biotics to rule out that it’s not an infection in the upper airways. Some doctors think it could be a possible side effects of the Botox in saliva glands that was injected on Gavin a few days before our trip to the NIH. Or it also could be an infection that worsened his upper airways or just a progressive symptom of the disease due to low muscle tone in the larynx-oddly enough which if it was part of the disease, it truly caught us by surprise; but according to some geneticists, this situation is not a typical Tay-Sachs symptom. This is very stressful, but all we can do is wait. I’m calling several other doctors for their opinion, but all their opinions vary. Gavin’s lungs are so healthy and it’s just strictly upper airway. I’ll know more information on friday. Worst case scenario for Gavin would be a tracheostomy- an invasive surgery we hope can be avoided at all possible. We wish we could come home soon and wish we could hold Gavin, he’s just so delicate in his bed in the PICU hooked to all the monitors and his breathing tube. Thank you again for praying for Gavin.

Please never stop praying for him. I know he will make this through! Hope is always alive. If there is life, there is hope. Hang in there my son!