No easy answers

The past few days have been long. Especially for Josh who is still commuting into work though all of this than taking the train out to Hackensack to visit Ben afterwards. I am continuing to work remotely at Bens bedside. Except for not having phone service, I can pretty much work like usual if not more than I was before. Work is always a good distraction especially since Ben sleeps most of the time.

I'll start off with what we do know. Ben has pulmonary hypertension. The right chamber of his heart is pumping overtime trying to deliver blood to the lungs. For some reason, the lungs are making it hard to let the blood in so his heart has to pump harder which has made him have an enlarged right chamber. They believe this is a secondary condition, not primary. He has been given two drugs, one through an IV and one inhaled to help with this. Thus far, it has been working and they are already discontinuing the IV one.

The doctors believe he has chronic lung disease based on how long he was previously on oxygen. This will in time most likely repair itself as our bodies continue to create new lung tissue until we are eight years old. This also is most likely not what landed us in the ER.

Ben now has pneumonia. They don't believe he had this when he came in, but rather based on the stress of everything that happened on Monday, developed it. He has been on antibiotics since we got here so that should clear that up.

As it stands, that is pretty much all the solid information that we have. Ben is acutely ill, that much we know. He is sedated so he is relaxed and on anti anxiety meds so he isn't as anxious. He cannot come off of the ventilator until he gets better. He has not been tolerating anybody touching him except for me and occasionally Josh. Even something as simple as a temperature check can send him into a severe oxygen desaturation. This has been slowly improving and today he even allowed an echo cardiogram to be preformed without dropping his sats. Unfortunately, an hour later, a temp check plummeted him again. This leaves nurses to walk on egg shells for fear of disturbing him. This needs to improve for him to be considered on his way to recovery.

Since we have been here, we have met with a geneticist who will be doing some testing to make sure there is nothing genetic going on. Some of these tests we will have results this week, some not for at least a month. Genetics is specific enough that only certain labs do certain tests and you must wait on how fast they complete. The longer ones are being sent off to the Mayo clinic and that just takes some time.

We have also met with an endocrinologist because he has some elevated thyroid levels. The endocrinologist is going to watch Ben but does not think it is cause for concern.

We have met with a dietitian who is trying to find the right formula for Ben that he will tolerate and grow on.

Some theories as to why Ben got so sick? Possibly he is having issues with reflux and then is aspirating that into his lungs. Possibly it could be more severe lung disease than previously thought. Most likely it is a combination of all of these things...we will work through each to try and figure it out but that may be a slow process.

Right now, we are focusing on one day at a time...getting Ben strong enough to need less oxygen and eventually get off a ventilator. Getting him to tolerate being touched. Letting the medicine work so that his heart doesn't have to work as hard. Little steps... Its not the answer anybody is looking for, but its all we have right now.