Home sweet home!

We're home! Exhausted, but home!
Getting ready to go down for his echo this morning.

Dressed and ready to go.


He's battered...

and bruised...

and pale...

but home. That's were we want to be. Right now we are not concentrating on how much time we may, or may not have. Although some tests will be ordered in the coming weeks. As of his today his echo was beautiful! The two new drugs and vent are helping tremendously! And of course every one's prayers are truly heard.
Last night was utter hell! The vent kept me up all night. He breathes so shallow when he is asleep, that the vent wasn't sensing his breaths. If we turned the sensitivity up, it over-cycled and beeped that he was breathing to fast. If we turned the sensitivity down, it didn't sense breaths at all and beeped apnea. I finally fell asleep for about an hour at 4 am. If the vent does this tonight, we will be going to the trach mask for the night. Right now we have the monster t-bird vent, because he only has it at night. Our RT is trying to get us the LTV. Much smaller and more portable, and he thinks it will be more sensitive.
Its a good thing we came home on a Friday, because we will need all weekend to recover! His room is a disaster as we try to fit even more equipment into it. I'm not kidding this time when I say we may be trading him for the master bedroom! We've added 3 new drugs costing an extra $60 dollars a month to his already huge regimen. I sat on the phone for an hour at the pharmacy, arguing with my insurance about a drug and that his doctor pre-authed it. Pulmonary hypertension meds are outrageously expensive and have to have a doctor get it approved. I'm just glad we got it worked out, we can't wait until Monday to get these meds filled!
Here's our newest addition to the medical machine family. Right now its sitting on Jax Ottoman. We need to go out tomorrow and get a table for it, ideally with more storage under it, as we've run out of that as well in his room.

He's not tolerating bolus feeds right now. We switched his g-tube to a GJ-tube before we came home. The vent gets so much air in his belly. So we will feed him through the j port at night and let the g port vent the air out. Hopefully this will help his distended belly go down, and he can go back to bolus feeds soon.
Tomorrow we are going to go swimming, and Sunday we want to go up in the mountains and see some falls. Just thankful to have my baby home again, after another close call!