Delayed post, home as of last night!

We arrived home last night but it was a flurry of activity getting set up in the house and comfortable taking care of the care needs ourselves and we were both extremely exhausted. Sorry to have forgotten to update. You probably all thought we were still sitting waiting on transport in the room...

So yes, we made it home, kids were here, we got the equip up and running. Meds, food, respiratory needs, trying to stay on top of things. Frustration felt a little high for both of us, most likely caused by the exhaustion.

We'll see how the recliner works for sleeping. I was on the couch and James was in the chair and I'm honestly not sure how much sleep either of us got. We rigged an ottoman extension for his legs propped on pillows. He's snoozing again now.

I mistakenly heated some left over coffee so here I sit....

James figured out his own tube feed set-up last night. He's so good with all of the equipment, tweaking the output of the mist to mask device, messing with suction pressures.

I'm trying to get a handle on the keeping the stoma clean, tricky after 2 hours of no humidity yesterday with leaving hospital and trip home. I feel like we're playing catch up and things are a little thick. When he wakes up I may try another deep suction with lot's of saline to see if we can loosen more gunk. Thick yellow stuff starts to collect and if it solidifies we're doomed.

I need to call the hospital to find out exactly how much of the tube feed he's supposed to get overnight. For the life of me I can't find it on our exit paperwork and the packaging is wee bottles compared to the hospitals large containers. We were winging it last night guesstimating how much. We decided late at night how much food he was getting for one night was the least of our worries as long as we stayed close or under. No need to overdo it.

They didn't seem so supply us with any of the fruity nutritional supplement packets. Phoebe suggested using Tang but I'm thinking perhaps not :^) will call the hospital and ask about that too.

I think I'm going to be leaning heavily on the hospital nurse case manager and visiting nurse today. The visiting nurse is tentatively scheduled for around 12:30 pm. We have the living room fairly well set up. I need to clean the kitchen, the remainder of the house may need to be what it is today....

All for now. I'm playing catch up with a little bead stuff while my babe sleeps. Will try to post again after nurse visits. xxoo Beth