Josh, Jackson and I packed our bags and headed to Children’s Hospital this morning so Jackson could have his parotid gland ligation (i.e. salivary gland surgery). Jackson had this surgery two years ago: his two main bottom salivary glands were removed and the two main upper salivary glands were tied off (ligated) and Botox was injected into them to get them to stop producing saliva. They don’t remove the upper salivary glands because there’s too many nerves in the cheeks and the procedure takes about three hours per gland so it’s a big deal. The prior surgery was a major success and improved Jackson’s respiratory health. However, a few months later, we discovered that the upper salivary gland procedure was ineffective and he was still producing saliva. The procedure was rescheduled for March but had to be cancelled due to his illness; at which time it was rescheduled to July and we canceled due to Covid. We have had several appointments at the hospital since March and we were finally comfortable enough (i.e. Childrens is doing a great job keeping everyone healthy) to go forward with the procedure during the pandemic. Jackson was also having trouble keep his oxygen up throughout the day so we knew it was time to do it again.

Today’s procedure didn’t go as planned. The pulmonologist went first and reported that Jackson had lots of secretions in his upper airway but his lungs look good. Yay!!!

Then the ENT came out and told us, after much searching by him and another doctor, they could not find the salivary ducts and, therefore, could not tie them off. This doctor believes that the doctor who performed the procedure two years ago thought she found the ducts but didn’t actually find them. He went on to say that Jackson is a 1 in a 100 case and either his ducts are not where they are supposed to be or they are too small to detect.

Everyone wants their child to be special. However, it totally sucks being different or 1 in a 100 or 1 in 250,000 (if you have Lissencephaly) in a medical setting.

The third doctor of the day, the radiologist, injected Botox into Jackson’s salivary glands, which will stop the production of saliva for about three months. Of note is that glands are not ducts. Glands can be detected with ultrasound whereas ducts cannot.

So, what happens next? In six months we will have an office visit with the ENT. We have been instructed to bring lemon juice so that he can attempt to locate the ducts in the office. The lemon juice should produce saliva when placed on the inside of the mouth. If the doctor can find the ducts, we will try this a third time. Third time’s a charm? If he cannot find them, then Jackson will go under general anesthesia every few months and get Botox injections in his glands. The issue with Botox injections is the more you get, the less effective they become.

Instead of spending the night at the hospital, we were discharged because the procedure was less invasive than originally planned. We never foresaw this outcome and are sitting at home discouraged and disheartened. Nonetheless, we will continue to take it day by day and keep Jackson as healthy as we are able. What can you do for us? Pray for a successful visit on April 29 and that the doctor can find those ducts!