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
Monday, February 5, 2018
Sunday, February 4, 2018
Well... we're waiting.
Day 12 hoping....
We're sitting here in the hospital room hoping today is the day!
Before I arrived James met with the surgical team who said all looks good. The respiratory therapist cleaned up the stoma removing all the crusty bits and said all looks good. The personal care attendant just did vitals and all is good. She gave us one of the magical shower caps so his hair is all clean and tidy. I think the nurse said all looks good too. It's the perfect storm for release to home.
On my way in I bought a hand held shower head, James' first task maybe installing it although it says it takes minutes with no tools so maybe I'll give it a shot. Last night James' sister dropped off a recliner that's been passed around the Mellor family as various people have had medical issues. It's our turn now :^) thanks Charlene for sharing it and delivering it to us and Sheryl for the original purchase. I'm sure James will love it!
I've been collecting supplies both from hospital as nice nurses pass things along for us to take home and also swinging by the pharmacy. We have stashes of things for wound care and clean up, supplies for the tube feed and suction and humidity. I definitely feel like we're good to go!
The house is a complete disaster still although living room where James will be stashed is lightly picked up. Once I'm home with James I can settle him in to the couch or recliner and pick away at the rest. I think I'd mentioned the med equip delivery guy casually mentioning that we may need to clean the filters in the equip a few times more often than the normally suggested once a week, yup, we're that house.
I need to do a little investigative work to see who dropped off flowers and a Trader Joes gift card. Thank you to the angel and I'm sorry you had to see the house/kitchen/yikes. Unless maybe it was Charlene when dropping off recliner in which case perhaps not too shocking since you've seen it all before... No matter whom I hope Frankie (crazed toddler german shorthair) didn't pee on you in his excitement. Once again I'm looking forward to being home with James so I can lightly wrangle the chaos of animals and house.
All for now.... James is reading the Sunday paper with hair smelling like sunshine and magical hospital shampoo. I'm going to do a little administrative work on the laptop for Beeboo. All is good. We'll update again when we receive word on release. Cross fingers with us!
Before I arrived James met with the surgical team who said all looks good. The respiratory therapist cleaned up the stoma removing all the crusty bits and said all looks good. The personal care attendant just did vitals and all is good. She gave us one of the magical shower caps so his hair is all clean and tidy. I think the nurse said all looks good too. It's the perfect storm for release to home.
On my way in I bought a hand held shower head, James' first task maybe installing it although it says it takes minutes with no tools so maybe I'll give it a shot. Last night James' sister dropped off a recliner that's been passed around the Mellor family as various people have had medical issues. It's our turn now :^) thanks Charlene for sharing it and delivering it to us and Sheryl for the original purchase. I'm sure James will love it!
I've been collecting supplies both from hospital as nice nurses pass things along for us to take home and also swinging by the pharmacy. We have stashes of things for wound care and clean up, supplies for the tube feed and suction and humidity. I definitely feel like we're good to go!
The house is a complete disaster still although living room where James will be stashed is lightly picked up. Once I'm home with James I can settle him in to the couch or recliner and pick away at the rest. I think I'd mentioned the med equip delivery guy casually mentioning that we may need to clean the filters in the equip a few times more often than the normally suggested once a week, yup, we're that house.
I need to do a little investigative work to see who dropped off flowers and a Trader Joes gift card. Thank you to the angel and I'm sorry you had to see the house/kitchen/yikes. Unless maybe it was Charlene when dropping off recliner in which case perhaps not too shocking since you've seen it all before... No matter whom I hope Frankie (crazed toddler german shorthair) didn't pee on you in his excitement. Once again I'm looking forward to being home with James so I can lightly wrangle the chaos of animals and house.
All for now.... James is reading the Sunday paper with hair smelling like sunshine and magical hospital shampoo. I'm going to do a little administrative work on the laptop for Beeboo. All is good. We'll update again when we receive word on release. Cross fingers with us!
Saturday, February 3, 2018
Day 11 again
I feel like I've dropped the ball a bit with the blog. Multi tasking in the hospital room with an online bead show had my brain going in a few too many directions. Although it has been nice to be able to hang out with James while I do it. Will be great to be back home tomorrow too if all goes well! So far so good....
I met with a med equipment guy at the house today. Apologizing (as ever) for the mess, dust, pet hair. He said with one of the machines you normally clean the filters once a week but suggested that we do it 2-3 times instead :^) yikes. Yup.
James continues to do well. It's so much better having the stitches and drains out. We go home with the tube-feed in place hopefully just for one more week. The wanted to continue it for a bit so his throat can heal. Visiting nurses start on Monday.
So med equipment will be humidifier tube contraption with stoma mask so he's breathing moist air as everything heals. If it dries out things get crusty and there is nothing good about that! Also suction equipment, very important to keep everything clear. James does have a nice strong cough to get stuff up himself which is great. Lastly the tube feed equip (will deliver tomorrow) which we'll run overnight just like they do in the hosp although we have to refill halfway. Thinking if we start at 6 pm and I make beads til midnight I can refill then sleep. Perfect.
James is looking very sleeping. I'm going to head out soon. Have a nice night all!
I met with a med equipment guy at the house today. Apologizing (as ever) for the mess, dust, pet hair. He said with one of the machines you normally clean the filters once a week but suggested that we do it 2-3 times instead :^) yikes. Yup.
James continues to do well. It's so much better having the stitches and drains out. We go home with the tube-feed in place hopefully just for one more week. The wanted to continue it for a bit so his throat can heal. Visiting nurses start on Monday.
So med equipment will be humidifier tube contraption with stoma mask so he's breathing moist air as everything heals. If it dries out things get crusty and there is nothing good about that! Also suction equipment, very important to keep everything clear. James does have a nice strong cough to get stuff up himself which is great. Lastly the tube feed equip (will deliver tomorrow) which we'll run overnight just like they do in the hosp although we have to refill halfway. Thinking if we start at 6 pm and I make beads til midnight I can refill then sleep. Perfect.
James is looking very sleeping. I'm going to head out soon. Have a nice night all!
Day 11 oops
Forgot to update yesterday! Yikes.
All good!
Drains are out. Neck stitches are out with tape closure in place.
Signed off by a bunch of people to go straight home on Sunday.
Heading in now and will update again from hospital.
xxoo
All good!
Drains are out. Neck stitches are out with tape closure in place.
Signed off by a bunch of people to go straight home on Sunday.
Heading in now and will update again from hospital.
xxoo
Thursday, February 1, 2018
Day 9 Big News!
Results from tests yesterday were all perfect. Dr. Vaezi stopped in last night (as previously mentioned) and he and James discussed going straight from hospital to home no rehab in between. They think he's doing well and is strong and because I'm home 24/7 with work it's doable. Our nurse case manager here (not sure if that's what she's officially called but she's organizing everything for us) is organizing the equipment needed (oxy/humidity equip, suctioning/respiratory equip, feeding tube needs) and is hoping that we'll leave the hospital Sunday morning and the visiting nurse will start on Monday. James is so happy!
They took the drains out this morning and most of the stitches. Hi neck is still a tiny bit red but so much better than before. He's had his hair "washed" using a pretty miraculous shampoo cap. It's been a good day. We have our favorite 5th floor nurse Nicole too. Nice!
The respiratory therapy guy let me do the deep suctioning today and James said I did a good job. I'll probably do that as much as I can while here with oversight so I'm completely confident when home. He'll shift at home between couch and bed so I've asked the case manager to make sure the equipment if portable/moveable.
Tube feed is not just at night 6 pm to 6 am so that he's disconnected during the day. They're doing a couple supplements daytime which are a quick drip. They will order all of that for us too. Hopefully the tube feed will end a week after home, no news on when they'll start testing drinking/swallowing. They want to give the throat more time to heal.
Hurrah!!! Thanks to all for love and positive energy sent out way.
And I haven't said it recently but if you're still smoking now is the time to quit.
xxoo Beth and James
They took the drains out this morning and most of the stitches. Hi neck is still a tiny bit red but so much better than before. He's had his hair "washed" using a pretty miraculous shampoo cap. It's been a good day. We have our favorite 5th floor nurse Nicole too. Nice!
The respiratory therapy guy let me do the deep suctioning today and James said I did a good job. I'll probably do that as much as I can while here with oversight so I'm completely confident when home. He'll shift at home between couch and bed so I've asked the case manager to make sure the equipment if portable/moveable.
Tube feed is not just at night 6 pm to 6 am so that he's disconnected during the day. They're doing a couple supplements daytime which are a quick drip. They will order all of that for us too. Hopefully the tube feed will end a week after home, no news on when they'll start testing drinking/swallowing. They want to give the throat more time to heal.
Hurrah!!! Thanks to all for love and positive energy sent out way.
And I haven't said it recently but if you're still smoking now is the time to quit.
xxoo Beth and James
Day 9 is his own advocate
So just after I left last night Dr. Vaezi stopped in (of course) and James said it was a good visit. More on that later..... waiting to see that it's true/happens as we've been disappointed before.
Since I'd missed Vaezi visit last night and not much would happen with surgical rounds this AM James suggested I take my time so I'm still home and he's still there.
He texted that last night the night nurse who comes on shift at 7 pm (same nurse as previous night who had skipped 2 AM meds) gave him his 7:30 pain meds at 10 p.m. What the heck! He told me he was quite "vocal" in his displeasure/upset and must have gotten his point across because she was there at 2 a.m. and 6 a.m. promptly to manage pain. I guess the patient is the one who needs to speak up. Go James!
I have a couple things to do here then will be driving in. Roads look squiffy so it may take a bit. I'll update again when w/the proactive patient. xxoo
Since I'd missed Vaezi visit last night and not much would happen with surgical rounds this AM James suggested I take my time so I'm still home and he's still there.
He texted that last night the night nurse who comes on shift at 7 pm (same nurse as previous night who had skipped 2 AM meds) gave him his 7:30 pain meds at 10 p.m. What the heck! He told me he was quite "vocal" in his displeasure/upset and must have gotten his point across because she was there at 2 a.m. and 6 a.m. promptly to manage pain. I guess the patient is the one who needs to speak up. Go James!
I have a couple things to do here then will be driving in. Roads look squiffy so it may take a bit. I'll update again when w/the proactive patient. xxoo
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