Lots of Updates & a Birthday

Our last post was in June when we wrote that Jackson had been congested and we were using oxygen and suction at home. Jackson’s congestion never cleared up and we were eventually sent to an ENT. We were expecting the ENT to tell us that Jackson needed his adenoids taken out. So, you can imagine our shock when we were told Jackson had a decline, was no longer swallowing and would most likely never get that function back. As a result, his secretions were building up in the back of his throat and he was aspirating some of his saliva.

The secretion buildup got so bad that we couldn’t go anywhere without the suction machine. The suction machine came everywhere: doctors’ appointments, the park, our parents’ houses. We even had to buy a car adapter so that we could suction him in the car because he wouldn’t make it one car ride without needing suctioning. We really didn’t go out this summer and early fall; or, if we did go out, someone always stayed home with Jackson. He also needed oxygen every night because his oxygen level dropped below what is safe when his secretions built up.

The solution for chronic non-swallowing and secretion buildup/aspiration is salivary gland removal. We have thousands of salivary glands in our mouth but only four major ones. Two weeks ago, the ENT removed Jackson’s two lower salivary glands, tied off the two major glands in his cheeks and injected them with Botox. The Botox helps stop the production of saliva quicker and also helps ensure the glands do not start producing saliva again.

The recovery was surprisingly quick and Jackson’s secretions have drastically reduced. We have gone from suctioning him multiple times an hour to a few times a day. He has two substantial incisions under his chin, which are much, much longer than Josh or I had imagined they would be. But, the incisions are healing nicely and look better than they did two weeks ago.

Jackson is happier and smiling more than he has over the past few months. We can tell he’s feeling better.

Jackson has two more procedures scheduled before the end of the year. He is having a notch in his airway repaired on October 30. His airway is bigger than it should be, which increases his risk of aspiration. The doctor will sew shut the notch thereby making his airway smaller and hopefully reducing his aspirations. Finally, Jackson’s hip surgery has been rescheduled to mid-December. We had to cancel the July hip surgery because Jackson was not healthy enough for the lengthy procedure.

Jackson had his seventh birthday on October 1! He used his communication device at speech therapy to tell me he would like a Peppa Pig birthday party. So Peppa Pig was our theme. I occasionally prop our iPad on Jackson’s wheelchair tray and turn on cartoons. During the two weeks before the party I put on Peppa Pig for him so that he could get in birthday party mode.

We appreciate your prayers for Jackson’s continued recovery and health.

This is the day after surgery. Jackson’s face was so swollen but the swelling went away quickly.

We put birthday cake icing on Jackson’s tongue and he didn’t know what to think.

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