My weary brain will forever beg your forgiveness. My existence resides somewhere between particularly and completely exhausted most days. This does not bode well for coherent thoughts put to paper….or blogged for that matter. Here is my grossly overdue update…….
There have been so very many times in our sweet Cannon’s Autism and medical journey that I thought things would get better.
When our intelligent, talkative Cannon regressed into his own rigid, nonverbal world at age 2……we thought…..as much as we were petrified of hearing the words…..that if we could just get a diagnosis……we could amass a plan and get the appropriate help. To get Cannon better. He was young. Recovery was possible.
When his digestive issues began….we assumed that if we could just figure out what was wrong…..we could fix it.
When his body refused to respond to every potential treatment and we were in and out of the hospital for 2+ years….we were told that if we got the Chait Button and Cecostomy tube implanted in our 5 year old’s abdomen…..he would get better. No more hospitalizations for his colon issues. We could administer the medication ourselves…..at home daily. I remember a specific conversation with a wonderful doctor in a hospital hallway. I said with confidence, “I can’t wait to JUST deal with Autism.”
When Gastroparesis (partial paralysis of the stomach) set in a year later…..we thought…..if we could just get him to the specialists in Ohio…..they will figure out what to do. They tried. Insight was gained. But…..better? No.
And then we discovered he was aspirating at an unconscionable level….A level nobody we’ve met had seen before. This was a different issue so the incredible amount of treatment would have to work for this…..RIGHT??!! Oh how I wish!
So, we conceded defeat against this child’s body once again. And put in the Gastro-Jejunal feeding tube. This would remove the possibility that his food would go the wrong way and end up in his lungs. It HAD to. Yet….read on.
Better is just not happening. Not yet at least. And can no longer be my WHOLE focus anymore. We have not lost hope by any means but choose to live life in a different mindset these days. To make each day the most comfortable, happy, and stimulating that we can. More on that in the near future.
To add insult to injury…….”out of the clear blue sky”….in December….the seizures came. And they came and they came. Sleep and even rest became intermittent at best. Another new normal to adjust to. Those “we can’t catch a break” thoughts were definitely trying to permeate.
As I stated in my last blog post, we had known (thanks to several EEG’s) for a decade that he had abnormality in his brain that could lead to seizures. But all this time, he had been seizure free. Which gave us that hope that he may never. Our neurologist had warned us a couple of years ago that puberty could potentially initiate seizure activity. And unfortunately this has come to pass. The next step was to put him inpatient for a 24 hour EEG. It was not an easy process at all. Being on the Autism spectrum compounds everything and every situation. The measuring, marking, gluing, taping, and binding of a bunch of electrodes to one’s head AND then have to stay in bed for 24 hours….not touching them…..was certainly not so simple a task for our severely sensory kiddo. But he really did so incredibly well considering. We had hoped that the abnormality seen years ago would be unchanged and in the same lone lobe of his brain. But sadly, this wasn’t so. He now has abnormality everywhere. All over. Front to back and left to right. They call it “multi-focal” and “bilateral.” With the most active regions being frontal, central, and temporal. My next question was if because they believe that puberty got this going…..does that mean that in a couple of years….we could be out of the woods. No. I’m told his Autism takes this off the table. So, they are here to stay. For life. We had also only seen seizure activity at night so we were hopeful that that was what they would see on the EEG. But they saw abnormality day and night. So, what does this all mean? It means that there is potential for bigger seizures and more damage to his brain from those seizures….as more parts of the brain are affected. This has been tough to take and also there has been quite a learning curve over the last few months. Like what different types of seizures look like (because we have to record all of them….big and small). I got recertified in CPR (He could stop breathing during or after one). He doesn’t sleep alone right now. Maybe someday. (PLEASE….I beg you….Don’t judge. He can…and has…..thrown up during a seizure which he can then aspirate. His lungs are weak from his already diagnosed Chronic Aspiration. If I couldn’t get to him quick enough to roll him to his side……It’s just too risky in our opinion). He has a video monitor in his room but y’all…..seizures aren’t loud. Roxy could potentially be seizure trained but things have to get more consistent first.
In early April, I had an appointment with our neurologist. The seizures just wouldn’t stop in the nighttime. We were getting to the point when there were about 3-5 nights per week. And some were cluster seizures. I had kept a log and upon explanation of every last seizure, he gave us the bad news. It was time for seizure medication. Something we had hoped to avoid. As once you start with these types of medications, you begin to potentially affect organ function. And in the long run…..this can shorten a life span. My heart was a bit ravaged that day. But what had to be…..had to be. His body was SCREAMING for help. And I will say….it is working. Since beginning the medication about 5 weeks ago, there has been ONE major night of seizures. It was an hour long cluster seizure and it was ZERO fun…..but otherwise….the medication seems to be working. The main side effect to this med is liver issues. And he already had elevated liver enzymes. SO, we will be checking on that quite regularly. His type of seizures only had 2 potential meds and the other can cause violent rages. An issue he has struggled with in the past. Our doctor chose to try this one first.
In early March, Cannon went in for his usual every few month procedures. His last check was in late September and was so good…..we waited a bit longer to check again. In true Cannon fashion, he flipped a switch and had one of his worst updates ever. His colon.….was extremely inflammed, friable (acutely prone to bleeding), and another detail I will spare you that was just too gross and unexpected. The report on his esophagus (which should be glowing as he no longer uses it for eating or drinking)….It too was also inflammed, friable, and covered in nodules. His doc… who I feel like I can read pretty well after a decade of working with him……wouldn’t talk about it or make eye contact afterwards. He said that we would only discuss those nodules once the pathology report came back. So, we sweated out about a week…..wondering if we were going to add cancer to our list. But it came back as basically a sign of severe inflammation. (squamous mucosa with patchy increase of interepithelial lymphocytes and spongiosis for my medical friends). And as for his lungs….inflammed, nodular, and the kicker……They were 50% full of lipid!!! Fat from his food. Food which isn’t even fed into his stomach but his intestines. In an attempt to put more distance in place and give less likelihood that it could back flow. But THAT much is going THAT FAR in the wrong direction. Insert exasperated, head in hand emoji. In response, we doubled up on meds that were already said to be far, far more than someone his age should be on. She also, in a taken aback sort of fashion, told us that he had coughed under anesthesia several times. This should not be possible. When questioned as to her take on this development….she just said that it must just show us how incredibly inflammed his entire body was.
Now, that you are up to date……Tomorrow, we go in for another barrage of procedures. He will have an Endoscopy, Colonoscopy, biopsies, and labs with his G.I. doctor. A Bronchoscopy with his Pulmonologist. A bunch of labs courtesy of his Neurologist (to check his liver). And while still under, he will get an MRI with Epilepsy Protocol with and without contrast. Which in case you were wondering is “a group of MRI sequences put together to improve sensitivity and specificity in identifying possible structural abnormalities that underlie seizure disorders.” We have an appointment in a couple of weeks to discuss the results of the latter. We would GREATLY appreciate any extra prayer time you might have for our angel.
I HATE his pain y’all! And seizures! I HATE IT ALL. When he struggles to sleep because the pain is so bad and the first thing he tells me in the morning is how much his stomach hurts…..My heart ACHES. I abhor watching his body lurch and writhe…..not knowing if THIS will be the seizure to cause damage to his brain. I take notes and take notes…..trying to find the missing piece. That will, one day, I pray…. help a doctor put all of these crazy pieces together and give him a definitive diagnosis instead of the 15….yes 15….he currently has! I’m tired of finding him passed out on the floor in random rooms of the house because of incredible nausea. All I do ACTUALLY know for FACT is that I can’t camp out in these moments. If I wanted to…..I could put down roots and reside in this constant state of helplessness. It would be oh so easy. But it would help NOTHING. All I can do is advocate to the hills, research my heart out, love and empathize with him with absolutely every fiber of my being, and pray with every ounce of my very soul. That’s IT! I’m powerless to all else. And you know what….there IS power in that! Because my God is ABLE! I shared recently on my Facebook page of a passage in 2 Chronicles 20. Of this incredible King of Judah and his belief and devotion to God as he went into battle. And when God responded he said, “Don’t be afraid or discouraged because the battle isn’t yours. It belongs to God! You don’t need to fight this battle. Just take your places, stand firm, and watch how the Lord, who is with you will deliver you.” I will believe until I breathe my last. Because I have felt it. The buoyancy, the peace amongst chaos, and the comfort that my cries are heard. My weapon…..the source of my stubborn faith…..is the presence of God in my life. I need only grant HIM access. Please friends! Just let go! Let HIM into your life and let HIM fill you with this INCREDIBLE peace! No matter what you might be facing or going through. You have nothing to lose and EVERYTHING to gain! We love you! God Bless!!!