It is more than time for an update on Sawyer. He is almost 2 and it seems so crazy! This last year has been full of doctor appointments and procedures. Back in July of last year, Sawyer had a sleep study test, for the most part the test went well, there ended up being no concern for sleep apnea, however, it did lead to us finding his oxygen levels were lower than they should be while sleeping. He was also found to have pneumonia at that time, but was put on oxygen 24/7 at that point, which they also hoped would help his pulmonary hypertension. He was then referred to something called an aerodigestive clinic.

The aerodigestive clinic was done over the last week of September and consisted of a team of doctors and tests and procedures to
address some of the issues we were seeing. He was seen by pulmonology, gastroenterology, ENT, audiology and many other therapists and specialties. The Wednesday of that week he was put under for many different scopes and tests to be preformed by the team of doctors working with him, as well as to have tubes put into his ears. During this time, they cleared his lungs, which he had an influenza H infection and tested his blood, which showed and extreme iron deficiency and lead to an overnight stay instead of outpatient to allow him to have a blood transfusion as well as an iron infusion.

What we learned with the clinic is that Sawyer was going to need to stay on oxygen for at least while longer at night, we did not find a
reason for his slow digestion or aspirating. From there he was put on antibiotics for the lung infection for 21 days and then a regimen of preventative antibiotics, an RSV shot and a pneumonia shot to help try and prevent any respiratory sickness over the winter, and so far, things have been good on that front. He continues to be on a liquid thickener to avoid
aspirating when drinking, and in general has been well since.

We did meet with Sawyer’s cardiologist, and although things aren’t as well as they had been after his surgery, the last few appointments things have held steady and we were able to space out the next appointment an extra few months.

We did a follow up appointment at the beginning of the year where he underwent another scope of his lungs and although he had a respiratory virus at the time, he was doing much better than he has in the past, we will be doing another scope in the summer as well, hopefully things will be even better at that appointment. They believe some of the issue stems from him aspirating when he is drinking.

During the aerodigestive clinic while the ENT was attempting to place his ear tubes she found that his ear canals were too small to place them, but wanted to get a second opinion so called another specialist to verify
she was unable to place them. While the other ENT was looking he found that Sawyer has something called a cholesteatoma in his left ear. This is a rare condition that is a collection of skin cells within his ear. Typically, this is
found behind the eardrum, however, Sawyers is located in front of his eardrum. The ENT that came in for the second opinion, happens to be a specialist that works with this issue and Thursday March 14th he will be having
surgery on that ear. Sawyer has on and off failed his hearing screenings on that ear and now we have a reason as to why. Dr Neff states this may or may not help his hearing but the purpose of this surgery is to take out the cholesteatoma, if we do nothing, it will continue to grow and could damage the structures within his ear. The kind of cholesteatoma and his age make this the ideal situation and we have been told it is very unlikely it will return.

We have high hopes that everything will go well and, hopefully, even though not the intent his hearing improves.