Bad news at the ENT

On Monday I took Hunter to his appointment with the ear, nose & throat (ENT) doc. I was feeling really apprehensive about this visit. Although Hunter has enjoyed a hospital-free winter I've been watching him decline in some day-to-day ways that have been hard to watch. He has started making snoring-like noises, although they sound more desperate than the average person sawing logs, while he's sleeping. His chest retracts dramatically as he struggles to get air into his lungs. Sometimes these episodes of airway obstuction will last up to 30ish seconds with him as pale as a ghost by the end.

He has also been having episodes (for lack of a better word) of chills?/shaking, followed by vomiting and then a high fever of 103-105. These episodes follow a very precise pattern/timeline when they occur but I haven't been able to pinpoint what triggers them and they appear to occur totally randomly. Sometimes he'll have two episodes in a week and them he'll go a month without having one.

The last thing Hunter's been dealing with is a complete inability to be upright. The minute we put him in his wheelchair or his carseat(I know, how dare I!) the coughing begins. Let me be clear that this cough is in no way related to mucus or sickness. He's been freakishly healthy considering. It is just a dry cough that produces white foamy saliva. He coughs until he makes himself throw up, which is problematic in too many ways to name, but I will highlight a few.

1) Every time he throws up there's a chance he'll aspirate some of his vomit which could cause pneumonia.

2) I feel obliged to prevent said puking and resulting illness to the best of my ability which means no chair and no carseat for Hunter right now.

3) Hunter - carseat and wheelchair = our life coming to a complete standstill. (Which is a hard graduation considering that's pretty much where things were at anyway.)

Thankfully, we added robinol to our ever increasing list of meds last week and that seems to be helping Hunter with the coughing spells. Our pediatrician's theory was that he was aspirating a little bit of saliva with every breath-kind of like when you are drinking a glass of water and a little bit goes down the wrong tube. For whatever reason, probably since being upright is hard work and the difficultly trickles down to everything else, when Hunter is sitting up it occurs a lot more than when he's lying down. Although I was extremely nervous about using this drug I have to admit that it seems to be helping him stay on top of his secretions, hence eliminating the worst of the coughing.

So, back to the ENT appointment. To sum things up, it looks like we will be traveling one of following roads with our boy in the future.

Road #1- The surgery path. Hunter undergoes at least one, but probably a couple, very serious, difficult-to-recover-from surgeries. He experiences significant amounts of pain as a result of these surgeries and there are no guaranteed results. Despite all we can do, he goes home to Heavenly Father much too soon.

Road #2- We do nothing and things progressively get worse. We watch our son slowly decline and potentially suffer significantly before passing away.

Road #3- We do nothing and this becomes the new baseline. Hunter hangs in there for several more years enjoying a decent quality of life in the meantime. Inevitably, however, we reach a crossroads and are forced to go down one of the aforementioned paths.

It was ironic for me to be receiving this news by myself. I used to force Bry to come to EVERYTHING after Hunter was first diagnosed. But it has been a while now that I am the only parent at the appointments. My hubby has this tiny thing called a job that demands his attention lately. I was pondering that we've both grown up a lot over the past five years.

Apparently not so much though that I didn't cry my eyes out on the way home and call Bry and my mom and dad for support the minute I got to my car. I don't know if I feel grown up enough to be making the kind of decisions that are ahead of us.