It’s Complicated…..

Yesterday, as I woke up to a kiddo with no congestion after a week of nothing but and one who was willing to tackle the difficult day that he knew laid before him…..I was struck by the impact of prayer. The priceless, selfless gift of prayer that so very many of you have completely blessed our families socks off with. As tears of thankfulness fall on my laptop…..I beg you to understand how very, very much we felt them. God bless you all! We love you so much!

Ok…..yesterday…deep breath… we go. I’m going to try to be brief. Ha!

The plan for yesterday was executed flawlessly minus the 3 extra hours we had to wait to get started. As soon as Cannon was down for the count, they got an I.V. and drew blood for ALL the labs. His G.I. doc’s nurse was there to grab them and take the vials directly to the lab. Then, the Interventional Radiologist came in to rid his body of the icky old Chait Button. (It has been leaking badly for the last year so they aren’t lasting as long. And it gets almost brown after beginning as white.) So, YAY for a fresh, new, perfectly placed button! He was then wheeled down to an OR where our new Pulmonologist performed the Bronchoscopy. We hadn’t met her before and were slightly apprehensive about beginning anew with someone…..especially being in the grave position we are. But, God could NOT have possibly answered our prayers more. She was BEYOND wonderful and the transition was so very seamless. She met with us for about 20 minutes beforehand and gave us lots of information, told us of things she was going to investigate, and goals she had for the procedure. Our minds were pretty blown by her awesomeness! Praise the Lord! Her part was to be followed by his G.I. doc performing the Upper and Lower Endoscopy. All went as well as could be expected in terms of execution. They even moved Mark and I to a private consult room instead of the general surgery waiting room. This was super helpful. We felt like high rollers.


His vocal cords and larynx looked good. One suspicion she had prior was that they could possibly have become numb from prolonged reflux…..This could be causing them not to protect his lungs and respond the way they should thus allowing aspiration. There is a test that is better at determining this but she has a pretty good feeling that this is NOT happening. THANK GOD. There was also no edema in his lungs as had been 2 Bronchs ago. BUT….there ARE now nodules on the wall of his trachea, and on the right and left side of his lungs. There is chronic inflammation of his airway wall. Extensive damage from aspiration and reflux. She wants to get a CT scan in the near future to determine the full extent of the damage to his lungs. She thinks that it hasn’t gotten to his air sacs yet but that is a matter of time if we don’t act. She got a good sample of liquid and we will have to wait for the pathology report to know about that. This will show the rate of aspiration… much fat from his food is getting in. She was shaking her head when talking about the sample. She did not seem to have any hope that it would be a good result. Not at all.

Upper Endoscopy

There was no food in his stomach which is always good to see considering he has Gastroparesis (partial paralysis of the stomach). But his G.I. doctor saw evidence of extensive damage to his stomach still. There was bile. LOTS of it. In his stomach. Bile belongs in the small intestines. I have pictures but I will spare you. It’s gross. My poor buddy. Can you imagine what that feels like? His esophagus did not look good. Appeared very irritated. It bled a lot more than normal when they performed biopsies. And there was what appears to be yeast in his lower esophagus. Which means it is probably raging in his gut. We have started him on Diflucan every day for a week and he wants us to continue once a week for 3 months which may turn into always because he believes it is another chronic issue. Cannon already takes a med for chronic bacteria in his gut….this would be for chronic yeast. There was also still reflux visible even with 3 of the highest doses of reflux medication possible being consumed each day.

Lower Endoscopy

This is usually done as a formality with no issues. But not the case this go round. There was A LOT of mucus present. There was irritation around his rectum which we now have to give hydrocortisone suppositories nightly for a while. There was also hypervascularity throughout his colon and rectum. All are not normal.

When the Pulmonologist and G.I. doc were both in the consult room with us afterwards they began discussing where we are at. We ARE going to wait for the pathology reports and labs to come back so that we have the full picture. But they agree its time for drastic action. We can no longer allow his lungs to be damaged by the reflux. We have done all we can medicinally. It’s not working. My understanding is that there are 2 options. 1) A Nissen Fundoplication which is a method of taking the top of the stomach and literally wrapping it around itself, 360 degrees, to create only a very small opening. It will change the anatomy of his stomach forever as it is irreversable. The idea is that he could no longer reflux or throw up. 2) A Gastrojejunostomy (GJ) feeding tube. A feeding tube placed in the small intestines rather than the stomach. His stomach is partially paralyzed so the regular feeding tube into the stomach would not work. The draw back to this one is that he would need to be hooked up to it continuously rather than just at meal time. Because the small intestines aren’t set up to take on large feeds.

There are issues and questions we have about each and we will be addressing all of that soon. Just need to wait for pathology and labs to come back.

We definitely suspected there was more going on due to his increased pain but this was far more than was imagined. But does help us understand the doctor’s urgency.

My prayer requests are twofold.
1) That the pathology and lab reports would come back quickly.
2) For clarity in the coming days as we make this very big decision.

Friends….thank you for the love, prayers, and ALL the kind messages. 4 1/2 years ago, when Cannon had to get his Chait Button….we felt very similarly. And that hasn’t exactly made life easy but it has improved Cannon’s quality of life. That is our sole goal as we pursue the next step. God walked beside us, guided us, and sustained us during the year or so it took us to adjust to the Chait. We are confident that that will happen once again. Are there tears and disappointment?…..Sure! Absolutely! We have done everything in our power. Everything nutritionally, therapeutically, medicinally, and more. And I wish with all my heart we could spare him from this but I have to cling to what I know is so. It is well with my soul!!!!! Through tear streaked eyes I cry out….It is well with me. Love to all!

“I love the Lord, because he has heard my voice and my pleas for mercy. Because he inclined his ear to me, therefore I will call on him as long as I live.” Psalm 116:1-2

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