God bless you all for asking! I keep getting texts, emails, Facebook messages, and calls inquiring about how our punkin is doing. GOD BLESS YOU! The answer is……as always…..complicated.
The first big change we have been working on since returning from our trip to Nationwide Children’s Hospital in Ohio has been adjusting the formula of what goes through his Cecostomy tube via his Chait Button. The doc was concerned with the high level of agitant (50 ml’s of liquid glycerin) and low level of saline (80 ml) that we were currently using per our hometown doctor’s orders. He wanted us to move it in the direction of 10-20 ml’s of agitant and 200-300 ml’s of saline. He felt this would decrease Cannon’s likelihood of getting sick during the flush. He also thought if we could significantly increase the saline that we could drop one of his current meds. One we had been concerned about from Day 1. The process of figuring out the formula took way more trial and error than we anticipated. Way more. But this week, we think we finally have it. The formula that does the job but without causing our sweet boy to get too sick. It is 25 ml’s of liquid glycerin to 300 ml’s of saline. This is a little more glycerin than the doc wanted but anything less simply did not work. We also found that the glycerin syringe had to contain a mixture with at least 20 ml’s of saline. Or it would get stuck and not push. The last thing we discovered was that we had to place the mixed syringe in the right order in the progression of syringes for it to be most effective. If we used it first…..Cannon got sick. Last, the flush would take hours or not work at all. We have found that the mixed syringe best works when given as the 2nd of the 6 syringes.
The other change we have made is to drop 2 meds. One, as I mentioned already, had been used to keep his stool hydrated but, for now at least, it seems…..he no longer needs it. Also, we have ceased giving him 2 out of his 3 doses of reflux medication. The doc in Ohio explained that this med was used to protect the esophagus from all of his throwing up. But he felt like it was killing all the acid in his belly….good and bad. And this is what has lead to the bacteria problem he has had for several years. He might need more regular scoping to check for damage now but that’s ok.
The biggest change since we have been back is that Cannon has thrown up very little. This is a huge change from the 2-3 times a day we were dealing with before we left. Praise God! Praise God! Praise God! However, to look at him…..you wouldn’t notice much change. He is still very, very pale. Very, very tired most all of the time. He starts telling me he is tired about an hour after waking and requests dinner and to go to bed around 2-3 p.m. He sleeps A LOT. And his anxiety is through the roof! Leaving the house is an incredible, incredible challenge right now. We hope the letter from the Ohio doc will get here stat so we can get some of the other prescriptions and ideas in place. Now, that we have the first few up and going.
Thank y’all from the bottom of my heart for all the love! We can Never, EVER say it enough! We assure you that we will keep up the hope! Because regardless the curveballs of life…..we have the precious and constant promises of our Father to cling to! (Coincidentally (not!) this is what we are studying this year in Cannon’s homeschool Bible curriculum…..God’s promises!) We will continue to allow HIS love and faithfulness to be our support! His presence…..our strength!
“Our hope is certain. It is something for the soul to hold onto. It is strong and secure. It goes all the way into the Most Holy Room behind the curtain.” Hebrews 6:19
“A word CAN give you strength to face another day! HOPE……HOPE CAN CHANGE EVERYTHING!”