Here’s What We Learned……

Cannon’s recent procedure results were a bit all over the place. Let me fill you in…..

To even have them done, we had to venture out of quarantine and take him for a COVID test 3 days before. He was NOT a fan of the basically “brain tickling” test. His actual comment during was so sweet and so pathetic at the same time. He sobbed to me and the two nurses with enormous, crocodile tears saying…… “This is a Cannon-mergency!”

June 8th…..we masked up and headed back to town for a full day or procedures.

(Side note……I’m soooo ready for this virus to be over so that Mark can be with us again on procedure days. Because these procedures are such a normal occurrence for us…..we have a great flow and system worked out for how we get through these days. This dang Coronavirus has definitely upset that. We make it work but I’m still not a fan! You can go AWAY NOW COVID!)

Anyways……on this particular day, an Endoscopy, Colonoscopy, biopsies, and labs were on tap with his G.I. doctor. A Bronchoscopy with his Pulmonologist. An MRI with seizure protocol (with and without contrast) as well as additional labs (to check on the effects of seizure medication on his liver) ordered by his Neurologist. I also requested that he get the COVID Antibody Test.

The day really went off fine so I won’t bore you too much with those details. Just clue you in on the results…….

First, the “better-ish news”……..

His colon.…It was still extremely hypervascular and the vessels distended…..and the biopsies showed irritation…….but it was better enough to take him off the evil medicine he was put on after the last set of procedures. It was SEVERELY constipating!! And because he has a tube that we flush daily with A TON of medicine to force his waste out of him…..this was a terrible combination. A sensory nightmare really! I called Mark from recovery and triumphantly told him to throw that med in the trash!

His lungs…..were a little less inflamed and nodular. However, he still coughed under anesthesia…..which is still a sign of massive inflammation in the body. In addition, the rate of lipid (fat from his food) in his lungs fell from 50% to 30%. It seems to go up and down with no rhyme or reason. But today…..we are thankful.

Now, for the not so good part…..

His stomach…… biopsies showed borderline gastritis. Inflammation in the lining of the stomach…..that he doesn’t even use! Boo!

His esophagus.….the lower third was far, FAR worse…..blood red and super inflammed….Absolutely heartbreaking to view in photos. The only explanation…..Cannon has a superpower. But unfortunately….It is refluxing. My child is now on 210 mg per day of reflux medication. NO…..I am not kidding!!!

Labs.….We DID find out his liver is doing okay thus far. BUT, 10 of the 14 orders vaporized…. as well as the tremendous amount of blood drawn to fulfill those orders. New ones were drawn this past week. No results yet. We lodged a complaint with the hospital. Hopefully, they will learn from this extremely unfortunate mistake!

MRI.….There was nothing new to report from a structural perspective. But we were very sad to learn that a Choroid Plexus Cyst was found in his brain. We were quickly told that he could have this his whole life and never have an issue. But, if he did……it would cause tremendous, debilitating pressure in his body and he’d need brain surgery and a shunt. As it would inhibit the circulation of cerebrospinal fluid throughout the body. Knowing Cannon……and his ridiculous ability to defy doctors who say things like “it shouldn’t be a problem”……. it’s hard to discount. We will not dwell on it…..but be extremely vigilant in watching for early onset symptoms.

Neurology..….Seizures continue to come with frequency and in clusters during the night. Medication has been increased for the 3rd time…..and a 4 day inpatient EEG has been ordered….. We plan to press pause on scheduling this for about a month in hopes that the virus will calm down before we put him in the hospital.

G.I..…His doc is currently deciding if he will give a pain medication……Cannon’s pain is so difficult to control. When at its worst…..he is either pitifully curled up on the floor…… or lashing out at us in a fit of anger. He just gets SO DONE WITH HURTING! But pain meds slow down the G.I. tract and are not ideal to give a child. So, we are still waiting on his decision there.

That’s it. You are up to date.

The usual mixed bag of gut punches and glimmers of hope.

I always need time to digest and process new findings. And take the time to think clearly about how those symptoms will translate into behaviors, feelings, and emotions in our uniquely designed boy. How I can help him cope. And how we can head off issues and stifle any symptoms. For example, one thing we do every day is monitor his heart rate. (I tried to get him to wear a fitness tracker to keep it easiest but he just couldn’t handle it sensory wise.) So, I have an oximeter that I throw on his finger every couple of hours or so (or when I just suspect there’s a problem) throughout the day. Without hard core pain meds, the over the counter meds can only do so much. We have discovered that when his heart rate starts climbing and gets into a particular range….there goes his pain. If we can medicate him when he gets in this range….we can catch it before it becomes more than the over the counter stuff can handle. Should he just tell us his pain is building?….Sure! Have we worked on that for years?….Gosh yes! Do I ask him often? And even more so on the rare occasion that he actually presents behaviors that are consistent with pain (posturing, etc.)? Absolutely! But this just hasn’t been reliable….so we use the oximeter and science to tell. And it works ok.

One thing IS for certain……life with this kiddo will NEVER be boring or mundane. It is constantly changing and sure keeps us on our toes. And as usual, we will continue to focus on loving him and trying to make his life as stimulating, comfortable, and joyful as possible. Soaking up the sweet snuggles he still so steadily initiates, his hilarious one-liners, as well as moments of triumph and breakthrough in our therapy and homeschool. I often feel like I sound like a broken record. “The joy of the Lord is our strength” being a constant theme of our journey with precious Cannon. But recently, on one day in particular, I was listening to an especially captivating sermon discussing our legacies in this life. And encouraging us to not just be believers OF God but to be Christ FOLLOWERS. Putting that faith into action. The service was followed by this amazing piece of music. In that moment, I felt like God spoke to my heart that this was the enemy’s way of trying to gain a foothold in my life. Not to let it happen and to continue to focus on my joy. It’s there. It’s real. And it is life sustaining!!!!

You need to hear it. Press play. PLEASE! It’s seriously what my heart wants to tell the world. And if the joy I chose to have in spite of our circumstances is all you remember about me when I’m gone…..I will be absolutely THRILLED with that! THRILLED! I love you ALL! (Now, please press play!)

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