Quality vs. Quantity

Last night on Facebook, I wrote: "For the first time ever, the phrase "quality of life over quantity" was spoken today. I'm not ok with that.{I'm going to have to write a blog soon to explain everything}

So, here we are. My blog...the place I used to frequent and haven't for almost two years. Where to begin? There's a long story short version, I suppose, but it will probably get to be long story long once I actually let my fingers start moving.

Way back when Ethan was a baby, he would cough after having apple juice. He could drink his formula fine, but apple juice would trigger him into a coughing spell. Fast forward to being inpatient during leukemia treatment and a doctor noticed this happen. 

"Has Ethan ever had a swallow study?"

No. 

Swallow study is ordered and dysphagia/aspiration confirmed with thin/nectar thick liquids {insert thickening agents here (Thick It/Simply Thick}. We've been thickening drinks for 13 years now. We've been pureeing food even longer as Ethan doesn't chew food or know how to manipulate food safely in his mouth. His food procession to swallow is rapid and can be quite unsafe if not watched carefully. Despite thickened drinks and pureed foods, Ethan LOVES to eat. He has quite the sweet tooth! He loves ice cream, yogurt, pudding, and most of all- pancakes. Due to rapidly progressing aspiration pneumonias over the past few years, we have since eliminated ice cream which is so sad. That boy LOVES him some frozen yogurt/ice cream! Ice cream was one of his first signs! He'd always been motivated by that special treat and we've had to take it away. 😢

Enter where we've been the past 8 months or so... Due to Ethan's severe reflux (acid is under control, but he likely still refluxes stomach contents), Ethan's GI doctor has suggested surgery- nissen and g-tube. This has not been a decision taken lightly and we still haven't come to a decision. We have been weighing over LOTS of info and seeing many different doctors.

GI: feels that for safe nutrition to be provided, surgery is needed.

Pulmonology: Agreed with GI at first, but since adding the shaker vest to our daily routine, she is on the fence as to whether surgery is necessary. Ethan has lung damage from prior aspiration pneumonias and we, obviously, want to keep his lungs from progressing with further damage.

Genetics: Notices that Ethan isn't growing/gaining weight which could be nothing as he's almost 16 and nearing end of growth or it could be that there's an underlying issue as to why he's not growing.

Cardiology: EKG was perfect and no murmur was detected. Cleared. :)

Surgery:  Surgeon recommends more tests which I will discuss more in a minute

pH probe: a spaghetti noodle-type probe to measure reflux over a 24-hour period. We will probably do this test inpatient with the anticipation that E is not going to be compliant in keeping it in. This way, we are where nurses can place it back in properly. The last time we had this done was over 7 years ago and the findings were that Ethan had silent reflux up to his sinuses. We have kept the acid under control with Prevacid, but it is likely that the actual reflux hasn't improved. It is highly possible that Ethan has been aspirating reflux.

Endoscopy: To see closer esophageal damage/esophagus function

Esophageal Manometry: Esophageal manometry is a test used to measure the function of the esophageal sphincter (the valve that prevents reflux of gastric acid into the esophagus and the muscles of the esophagus.This test will tell your doctor if your esophagus is able to move food to your stomach normally. The manometry test is complicated. Ideally, this test would be done on someone who is awake and able to follow commands as when to swallow. Because Ethan has proven to be non-compliant, it is suggested that his test be done sedated. It's not ideal nor perfect, but the only option for Ethan. Problem being that there is ONE doctor in all of North Carolina that performs this test on kids and he's in Charlotte. I don't mind driving there, but his wait list is a few months out. We are going to get Ethan on the books for the first two tests here locally and if our GI gets the info he needs from those, then we can cancel the manometry test in Charlotte.

So, what are we looking for? We are trying to figure out if 1) surgery is even necessary 2) if surgery is necessary, can Ethan still eat by mouth?

It seemed cut and dry- the nissen will keep things from coming back up (YAY!), but it's not that simple. It will also make getting things pushed past it a little bit tougher. This is why we need to know how his esophagus is functioning. We can bypass the nissen and only get a feeding tube, but that doesn't help him if the pH probe still says that he refluxes with aspiration risk. Then, the GI says that we can just bypass it all with a G-J tube. I'm not a fan of that option at all because this would require continuous feeds vs. bolus feeds. While discussing all of this with the doctor yesterday, I voiced my concerns about the fact that as Ethan gets older, things that bring him obvious happiness are fewer and fewer to obtain. Food makes him happy. The idea of taking food away crushes my soul.

"This is when you have to consider quality of life over quantity of life."

I understood at the moment what he was saying- what he meant, but it wasn't until I was telling Scott about it last night that it actually hit me the words that were spoken and what they actually meant. He was basically saying that if the tests come back telling us what we think they will, Ethan's ability to eat by mouth will have to be drastically reduced to keep his lungs safe (quantity). This will be a really tough and sad transition for Ethan (quality), and all of us. This is a long-term decision for Ethan's life and we don't take that lightly.

Moving forward, we just have to keep the faith that the tests will show definitive results that will help us make the decision easily. We welcome your prayers and good thought juju over the next few months as we make a decision. Ethan's a fighter and a trouper- always has been, always will be. This will, one day, all be a blip on the screen of Ethan's continuing life story.