This whole blogging thing comes no where in the remote realm of naturally to me. I struggle mightily with how to articulate all things medical and developmental in a coherent fashion, consolidate happenings, edit down content, and unload my truckload of emotions. The latter being most definitely my biggest weakness. Then you throw in the constant state of exhaustion that I live in these days thanks to the enormity of work there is to do with a child with essentially 3 tubes. And there you have why this blog is pretty much doomed to its sprinkling of posts per year. My heart cries with the desire to be better, to communicate more, to have and use this as an emotional outlet, and to be available to be here for others in similar situations. I’m failing up to this point but forever determined to do better.
One of these days I WILL do a “day in the life” post…..so y’all can see and hopefully truly experience what all this is really like. But for now, I will just attempt to do a quick update of the last few months.
November…..8 days in the hospital to place the feeding tube and re-place the Chait Button and Cecostomy Tube. The feeding tube dislodged and had to be re-placed at one point during the stay. We were trained on how to administer feeds and meds through the tube. All medication prescriptions had to be rewritten into liquid AND dye free form. We were taught how to compound those that couldn’t be. We also had to obtain all medical supplies and equipment for home before release.
Whirlwind. That is the only way my incredibly fatigued mind can think to describe those next few weeks. I desperately wanted to connect with you, our faithful prayer warrriors, but the reality of our new existence…..it was just impossible. I was merely existing. Learning, making mistakes, trying to find a rhythm, and then more of that merely existing part.
I was so beyond naive going into this. I thought it would be so much simpler. Cannon will get a tube. Food will go through the tube. He will wear this all on his back. End of story, right? Wrong. So wrong. We have been using ready to feed, pourable formula for the last several years. Now, we have to mix our own…..with 11 packets of formula that come in 2 boxes…..a day. Y’all…..my pantry! There is very little room for food in it now. It’s all medical supplies and formula and feed bags and wound care supplies. He is hooked up 20 out of 24 hours a day and the feed bag has to be refilled every 3 1/2-4 hours to prevent bacteria buildup.
Somehow we made it to December. And that brought another scary happening. A pre-planned trip home for the holidays. Something I had been so inexplicably excited about since it’s gifting for my 40th birthday earlier that year. But now…..a cross country trip…..3 weeks post surgery when he is still not getting off the couch?! It was so daunting! But thanks to the best parents a girl could ask for (who did an incredible amount of prep and rented an IV pole, wheelchair, and so on), an awesome med supply company (who shipped Cannon’s formula and med supplies for the month to SC), and friends who understood that they’d have to come to us this trip (no matter how much we wanted to…..we couldn’t be running around trying to see people with Cannon in the condition he was)……The trip was a success! Cannon even seemed to gain SOME strength from all the love.
Miraculously, we even snuck in an incredibly brief photo session with my precious cousin! A true victory!
(More to come on that later.)
January began with a rough in office procedure to remove some pesky tissue from the surgical site. Let’s just say the surgeon was nearly “dethroned” from her rolling stool at first attempt. After that was resolved, we began to try and get back into some of our daily activities and routine. Wow! I thought I used to have a lot to think about before leaving the house. Now, the details felt endless. Cannon was also still requiring the wheelchair to go anywhere. He just did not regain his strength and energy level like we had thought he would. But I was able to go to a few meetings of my networking group with the boys in tow, take Townsend to Taekwondo again (even though we mostly just waited in the car), and even attend a few fitness classes at local studios. I experienced incredible “mom guilt” and felt like I was forcing it…..dragging him around. But it was time to try. So, try we did.
The “highlight” or maybe I should say “lowlight” of February was a 5 day hospital stay thanks to a colonic impaction AND clogged feeding tube. An unexpected and unfortunate bump in the road. We were just about a week shy of replacing the feeding tube when it as well as the gastrostomy and cecostomy tubes all stopped flushing. In the middle of the night, of course. With Mark at work and unable to come home. It was a drama filled development but Cannon handled it far better than we could have imagined. And all got fixed in due time.
On to March……..2 weeks ago, Cannon had his first set of Endoscopies and Bronchoscopy since his feeding tube was placed in November. All to give us a progress report of sorts. To refresh your memory……that placement happened due to his killer reflux which doctors believed was the carrier of stomach contents (or the lipid aka fat from them) to his lungs. After years of treatment with no progress to show for it….we put in a feeding tube and fed exclusively through the intestines…..NOT the stomach……which should eradicate this problem. In theory. But the theorists don’t know my Cannon. We received the news this past week that Cannon’s aspiration into his lungs has INCREASED……not decreased or gone missing as we’d hoped. A monumental discouragement to say the very least. There should be virtually NO WAY this can happen. But it has and now we just have to accept it and move forward. One bright-ish spot is that a chest x-ray determined that the lipid hasn’t caused any NEW damage to his lungs. So, it’s there…..it isn’t healthy, good, or going to stay damage free forever. But for now….we will just have to be ok with this. And focus on the whole “it’s a marathon, not a sprint” logic. A couple of other random finds were a Vitamin D deficiency and bleeding adenoids. The first, we have dealt with before. He was taken off that supplement when we began formula as they thought this would provide all he’d need. Oh well! A liquid supplement has been ordered. These crazy adenoids are a bit of a mystery as this is ALL NEW to the pile of issues Cannon has. But it’s believed that a familiar culprit…..irritation from reflux…..may be to blame. We also discussed Cannon’s dependency on Ibuprofen to sleep or function. We will be trying a new, coating agent for his tummy…..to prevent an ulcer and hopefully help some.
BUT then there are the developments of the last few days. Extreme agitation from Cannon, excessive reflux, and a darn near IMPOSSIBLE to flush Cecostomy Tube (the one that helps him use the restroom). Like, it takes ALL WE HAVE between both Mark and I to hold the connections in place and not have them blow out and spray solution everywhere. And EVERY OUNCE OF STRENGTH to get the 6 syringes into him. We have been in contact with the surgeon and she is ordering a contrast study to be done in Interventional Radiology in the morning (hopefully). And putting him on her schedule to change out the tube in the OR later this week. We are praying for 2 simple outpatient procedures but that is completely dependent on whether or not we can continue to find SOME way to get this thing to flush. It seriously feels like we are going to blow him up internally. But we have been assured that the water flow will help with the blockage. If we can’t, he’ll have to be inpatient again.
FYI the probable cause of all this seems to likely be the formula he is on. It may just be too constipating for him. Its possible that once the tube is changed and we have a fresh one to work with……a new formula may be the tweak that makes all the difference. It’s so darn hard to accept the trial and error that comes in to play when hospital stays, pokes, and more medications and procedures are on the line. But such is the medically complex life. Moving on…..
I don’t know y’all…..yesterday……I just got sad. Simply put…..sad. Defeated, overcome, crushed. Like a failure to my kiddo who looks to me for help. His, once conquered, angry meltdowns have begun popping up in the most random places again. And are just terrible! A sign of how D.O.N.E. he is with hurting ALL. THE. TIME. And since he’s most comfortable with Mark and I…..we are the receivers of his rage. It’s another level of awful to see him temporarily so out of his mind. Like a sledgehammer to my heart and sometimes, for a brief moment…..my soul. BUT only for a few moments do I let those emotions bubble to the surface. I unload them and then shake it off. I can’t. I just can’t give those a foothold. Put those emotions out and slam the dang door!
So I CHOOSE to let hope rise from the ashes of this latest attempt to burn us down. I step into this next week of uncertainty with stubborn faith. Faith that knows beyond the shadow of a doubt that we will be ok. We WILL get through this. With determination to find the right solution to make this as painless as possible and prevent future issues. With peace that God is in control and knows what he’s doing. With hope that this pain is only temporary. One day…..if not on this Earth…..Cannon will be whole. He won’t need a tube to help him eat….. nor a tube to use the bathroom. He will be perfect and glorious in Heaven one day. I rest in that and focus my energy on making tomorrow the best I can. Controlling my attitude towards the stumbling blocks and pitfalls and remembering how very much Cannon is loved by His Creator.
This song was on repeat yesterday. Please listen! PLEASE! And let it speak to you. As it did to me in my moments of great need. God bless you ALL! THANK YOU FOR YOUR PRAYERS!