The Gall…

The definition of gall is “bold and impudent behavior.” And that’s exactly what the last few days have felt like – atleast where Ben’s gall bladder is concerned.

A little over a week ago, Ben started experiencing some pretty uncomfortable digestive symptoms which progressed to intense pain on Wednesday night. We made a trip to the ER where they ultimately discovered that it was his gall bladder that was causing the problem.

On Thursday morning, Ben had a HIDAL scan which ultimately revealed that the wall of his gall bladder is dysfunctional resulting in an ejection rate of only 11%. Based on the scan results and that he has no gall stones, this dysfunction is likely the result of disease progression and not due to infection or eating habits, etc.. Here is a link to an interesting article about the correlation between neuromuscular disease, decreased gut motility (how things move through once we eat), and gall bladder dysfunction.

The treatment team is considering three different options. The first was to treat the infection with antibiotics in hopes that it would calm things down and he would be able to tolerate food. While his white count has improved, unfortunately he was not able to tolerate food yesterday or today.

Plans B and C are more challenging. Plan B would be to place a drain tube in his gallbladder that they would leave in for six weeks while simultaneously treating him with oral antibiotics. At the end of that time, they would rescan his gallbladder in hopes that it had healed. If you read the article linked above, you understand that it is highly unlikely that this would be an effective treatment for him. However, it would give us more time to potentially look for other options and get him home. It is not clear if it would provide any relief in regards to the extreme gastrointestinal discomfort he is experiencing.

Plan C is to remove the gallbladder completely. This surgery is fairly common. Or so we thought. During surgery, under general anesthesia, a tube is placed in the throat to help regulate breathing. For Ben, this is where it gets sticky. There is significant concern that he is not strong enough to be extubated afterwards which would mean he would need a ventilator to breath for him. While it would likely resolve the gastrointestinal issues, life with a ventilator is not what he would choose. We have spent the last few days having some pretty intense, deep, and personal conversations about what this means and frankly, if we are ready to say goodbye.

Honestly, we need a miracle. Our hearts are tender and we are tired. Ben is so uncomfortable. He’s frustrated and overwhelmed. His blood cultures showed some bacterial growth so we are dealing with that today, too. Please continue to pray – for peace, for healing, for our treatment team, and for our family. We aren’t sure which way we are headed yet but we feel your love. We know God is in control. We know that families are forever and the eternities are real. Thank you for the texts, messages, prayers, and service to our family. We appreciate it so very much!

I’ll keep you updated.

Much love,

Bridget and Ben

PS: Feel free to call or text him. He’s a bit sleepy but he does read your messages.