It has been a busy few weeks since we talked last. I have been trying to get my feet back under me from Cannon’s hospitalization, while also prepping for, raising money, gathering a team, and walking our local Autism Walk. And seeing an addition on our house to completion. Lots to tell you guys in the near future. Good stuff! But unfortunately first…….I have some not so good news.
Well friends and family, since Cannon came home from the hospital 3 weeks and 3 days ago, I sensed something. Call it a sneaky suspicion, mother’s intuition, or whatever. But, I was just convinced that Cannon was going to have a quick turn around. Back to the hospital. I even voiced it to several people. After the initial cramping wears off, usually he has an INCREDIBLE week! He talks more, makes insane eye contact, and is so so very happy. But this time, he didn’t have that good week. At all. He seemed more frustrated and agitated than happy, go-lucky. We LIVE for that awesome week! It kind of drives us to get through the awful clean-outs because we know the amazing week is coming. But, it never came this go round.
So, the first week was characterized by frustration and agitation. And the second followed it up with additional crying spells, begging for medicine, lots of hug requests, and an extreme increase in meltdowns. He was such a roller coaster. Having a good part of the day and a horrible rest of it. Enough to keep us guessing about what to do. To take him back to the hospital or wait and see what happens? Traditionally, when we have brought him back to the hospital early after treatment, the problem is air instead of impaction. Because of Cannon’s intense sensory issues, tons of air in his body (translation: gas) feels the same as an impaction. He reacts exactly the same way and there is no way to tell the symptoms apart. Without an x-ray. Now, the third week has continued all symptoms of the previous two and added loss of vocal control, uncontrollable screaming spells, bouncy, very disconnected, scripting constantly, and just intense hyperactivity. And he also mixed it up that week by being amazingly good in spurts. Like Easter Sunday, he sat through the entire church service! But Monday morning, he tipped the scales by screaming “Help Me” at the top of his lungs for 2 hours. We brought him right into the E.R. where he proceeded to play happily and hug everyone in sight. Further confusing me and making me doubt myself.
Anyways, the short version of what happened next was that he got 3 x-rays taken and they showed significant stool burden and something new……elevated air fluid levels. The latter which caused the docs to call for a surgery consult. We were told that those levels can sometimes increase from an obstruction or also appendicitis. Surgery didn’t think he was in any immediate danger but wanted to keep a close eye on him for any changes. We went down to anesthesia later Monday evening and got the Nasal Gastric tube (N.G.) and I.V.’s inserted. Began the medicine (Go Lytely solution) around 2:15 in the a.m. and as I type this we are about 1 1/2 hours from finishing the first gallon. He will do a second and then take another x-ray to see where we are.
This day has been tougher than most. Cannon has been severely frustrated and agitated. It is unclear if he is in more pain than usual or if it is just the close proximity to his last hospitalization. Or maybe both. The out of whack air fluid levels could also be the culprit. He usually wants you to hold him in a standing position on the bed for most of the day. I guess so that gravity can do some of the work for him. But not this time. When he is not screaming and thrashing…….he is laying perfectly stiff as a board. No moving at all. And finally and heartbreakingly (for his mommy), he does not want to be touched at all. My child is a lover. He will hug anyone, stranger or not, any day, anytime, any where, and for any reason. But not today. He would have no part of a hug, snuggle, cuddle, kisses, or anything! We are hoping things will be better tomorrow. That with the opportunity for more output…..his perspective will be a little better. Well, that is all for tonight folks! I am beyond wiped! Sorry! Gonna run catch some zzzzzzzz’s………….while you check out this quick pic of Townsend living it up with 2 clowns that stopped by the floor today! He is such a riot! Not sure who was more entertaining! 🙂