What a week.
A LOT happened. We were busy everyday, and when we weren't busy we were exhausted!
A quick run down of what our week looked like:
Monday: Waiting rooms, appointments, doctors, nurses, therapists, and more waiting rooms.
Tuesday: Outpatient tests: swallow study and FEES study were the highlights. Plus a haircut!
Wednesday: OR day!! 6 hour delay/3hours in pre op/4 hours under sedation- it was a long day.
Thursday: PH probe in all day, more therapy appointments.
Friday: Special appointments, 8 hour drive home, and stops at Chipotle and a bakery!
So, why did we do all of this? What did we find?
The results have started rolling in! Easton's team ran hundreds of tests, but these were the notable ones.
Labs: Some of his general labs were off. Including his iron and iron stores. For this, he will be receiving an iron supplement to hopefully raise his iron without needing an IV infusion. This iron deficiency may be a reason for his sleep issues (it can cause restless legs) but he will have a sleep study at the end of the month to rule out other sleep issues. A few other labs were low or high, and we will be redrawing these to watch for trends. One of these low labs were Immunoglobin A, which could be pointing toward immunodeficiencies or other genetic diseases.
Swallow Studies: Easton had two different swallow studies done. One was a fluoroscopic swallow study, which watches Easton swallow liquids on imaging similar to an x ray. This showed that Easton didn't aspirate, so he passed for the first time ever! However, he also had a FEES study done. This is a study where they thread a small camera down his nose and have him drink. The doctor can physically see what is happening while he swallows. This showed some minor aspiration that he cleared quickly on his own. What they concluded from this is that he usually doesn't aspirate, but is high risk to. Still HUGE improvements from where he was 16 months ago.
Weight: As you probably know, Easton's size has always been an issue. However, around November 2018, his slow growth became stagnant and his weight and height will not budge. He receives double the amount of calories he "should" need, with no avail. The nutrition team decided on a change of formula to potentially help. However, we also met with the genetics team to see if there is some other reason Easton can not grow. One positive is that Easton is fairly proportionate. Meaning even though he is tiny tiny, his height and weight match.
Easton went into the OR Wednesday evening and had a bunch of different very important things done...
ABR: this is a hearing test that tests how the brain reacts to sound regardless of the ears function. Easton passed! This means that he can hear, his developmental delays may be affecting how he (doesn't) knows how to respond.
Chest CT: Easton looked pretty good, although his lungs showed minor scarring from his aspiration as a baby. This should not affect him. In the picture below, the white spots show where the scarring is.
Scopes: This is where things get complicated. Easton's stomach and intestines looked good. His lungs appeared healthy- but upon further inspection, things were abnormal. One thing they do while scoping his lungs is put a few drops of water in each lung, then pull it back out. They can then tests this liquid for infections and abnormalities. Easton's cultures came back positive for not only one bacteria, but THREE different types of bacteria. at the time, he was not showing symptoms of a lung infection. He since has developed symptoms and he will be on specific antibiotics for these bacteria types for awhile. A second culture testing for viruses also came back with an abnormal result. he had CMV in his lungs, where it should not be. WE are keeping a very close eye on this, and if he develops pneumonia we will have to treat it as CMV pneumonia- which is incredibly serious. For now, we are consulting with new specialist about this.
Ph Probe: The Ph probe was placed Wednesday in the OR and had to stay in for 24 hours. It went through his nose, down his throat, and ended in his esophagus, before his stomach. We had to manage it all our appointments outpatient on Thursday and it was taken out before bedtime. This probe has many tiny sensors to measure reflux frequency and acidity. The results came back that Easton's reflux is still very severe. In fact, he had about 90 reflux episodes in 24 hours (an episode is 2 min long- so if he refluxed 5 times in two min, it still only counts as 1). Of all these episodes, over half were refluxed high enough to impair breathing and be aspirated. They found stomach acid in his lungs, so he is aspirating it and it is causing irritation to his lungs. The reflux was also highly acidic regardless of the very strong antacid he is on. He will have a lab done soon to test if he hyper metabolizes (processes to quickly) the antacid medication.
So, what's the plan/what's next?
Moving forward, there is a lot on the horizon. We are still waiting for lots of tests to come back. Genetic testing should be back in 3 weeks or so. Sleep study, antacid metabolism testing, follow up labs, are all up coming in the next few weeks. Along with some appointments to evaluate his muscle tone and delays. As always, keeping close tabs on his weight is important as well.
We are treating the bacterial infections (all three) in Easton's lungs with a mixture of antibiotics. We have added in supplements to correct his labs.
Overall...
I was incredibly impressed with the Mayo Aerodigestive Clinic. My only regret is not going sooner!
It may seem like a lot of testing and pain for no new mind blowing answers. And it was. However, with a medically complex kiddo, any additional information can provide life saving guidance. The information that this team gathered about Easton will hopefully help us improve his life and help him finally thrive.
As always, we will keep living life and enjoying every minute! Thank you all for the love last week, it was tough but you all helped us through it. A SPECIAL thank you to my mom for being there, I don't think we would have survived those days without you!
Comments