The stoma is small enough that James can now cover it with his thumb and speak as long as the prosthesis is clear (it does get clogged quite a bit). James told Phoebe he sounds like Froggy of Little Rascals. Phoebe is still so much better at reading lips than I am. I keep looking at his eyes. Stop looking at his eyes.
The stoma is also small enough that if James "nods off" sitting up he feels like the head drop closes the opening and he stops breathing. Wearing the humidifier mask helps keep the path to breathing open as it keeps his head up. We're hoping this will be something that will be addressed and corrected next time we see Dr. V. either with the HME or some alternate device.
The visiting nurse had tried to order supplies for us to clean the stoma (long medical grade cotton tip q-tips and cotton pads/sponges) I've been making due (barely) with regular q-tips and tissues. Yikes. So we've been patiently waiting (not) for over a week and just found out that the med supply company rejected our insurance. I really miss having good health insurance that doesn't get rejected. Ugh. I found them on Amazon. Cost isn't hideous so I placed the order but honestly seems like something med insurance should cover don'tcha think?
Still watching the Olympics.
Tuesday, February 20, 2018
Sunday, February 18, 2018
Full speed ahead
We live in New England so snow, yup. James was out shoveling before I got up this morning then went to snow blow for the elderly gentleman he helps. Now he's out and about visiting friends, maybe you?
Saturday, February 17, 2018
Moving forward
We met with the Radiation Oncologist, Dr. R., Thursday to review surgical results and upcoming treatment plan. He scheduled us to go back next day, Friday, for imaging and treatment prep. Radiation will start Monday, March 5 and Dr. R. is planning 7 weeks, 5 days per week due to the advanced stage of the disease. He'll also overlap with chemo and we're reverting back to the original Med Onc, Dr. W., who James thought was a bit negative but the surgeon and rad onc both think is very good. We're leaning towards two full strength chemo treatments rather than weekly low strength. We have an appt with Dr. W. on Feb 27 to plan it out.
Dr. R. (rad onc) also shared details about the surgery which we hadn't heard from the surgeon... the tumor was over 4 cm (close to 2") and was removed with clean/clear margins. Dr. V., the surgeon, also removed 51 lymph nodes in levels II-IV of the neck and a section of the thyroid (no wonder the surgery took over 8 hours). Several of the lymph nodes were cancerous but there was no sign of "extracapsular extension" meaning that the cancer was contained within the walls of the lymph nodes which is good news. There is one suspicious Retropharyngeal Node remaining which couldn't be removed during surgery as it was too deep and will be part of the focus of the radiation.
Prep Friday involved head/neck mold and mask creation so that each time James goes in for treatment he'll be positioned in exactly the same way quickly/easily. I was sent out of the room but James told me after the fact that it was painful/stressful. He wasn't quite due for pain meds before we'd left so was overdue by the time he was taken back for the appt. In hindsight we should have thought to bring meds and he should have taken something for anxiety. The mask creation is a plastic mesh "plate" which is heated/softened and then pushed/molded over the face til the edges touch the table surface so it can be pinned in place during treatment. It put pressure on his already painful neck. If you have any issues with claustrophobia and/or anxiety about being unable to move I'd highly suggest taking an Ativan before having this done for head/neck treatment. The radiation technician was kind at least.
James treated himself to a Starbucks coffee after all was said/done. His new favorite post-treatment treat is a small dark roast, simple pleasures are key. I think it was being unable to have coffee for a few weeks or was it a month through surgery feeding tube etc. If looking for a gift for James a Starbucks gift card would be awesome for 7 weeks of daily treatments. I should probably check to see if they take traditional Starbucks cards first though since it's a little hospital kiosk. Hmmm.... maybe I'll buy the first card to check :^)
Today is a Saturday and we're relaxing at home waiting for the power to come back on. They're working on supplying internet to our wee town via Comcast (yes, we're one of those tiny towns....) so are doing work today on transformers and lines and poles. Good thing the suction equip has a battery back up! Next week we don't have any doctors appts other than the visiting nurse. Shocking. What will we do with ourselves???
Leaving you with a few thoughts. That was a damn big tumor and we should have caught it earlier. If you still smoke now is the time to quit. James was very excited to check off "former smoker" on his hospital paperwork when seeing the surgeon then underlined it to point out to me when we received the visit summary at the end of the appointment. His PCP, Dr. E., asked if he still thinks about smoking and James replied "every day". He wears a nicotine patch and it does help but the craving is still there and may always be. That being said we only have one life and he has chosen to live it. xxoo Beth and James
Dr. R. (rad onc) also shared details about the surgery which we hadn't heard from the surgeon... the tumor was over 4 cm (close to 2") and was removed with clean/clear margins. Dr. V., the surgeon, also removed 51 lymph nodes in levels II-IV of the neck and a section of the thyroid (no wonder the surgery took over 8 hours). Several of the lymph nodes were cancerous but there was no sign of "extracapsular extension" meaning that the cancer was contained within the walls of the lymph nodes which is good news. There is one suspicious Retropharyngeal Node remaining which couldn't be removed during surgery as it was too deep and will be part of the focus of the radiation.
Prep Friday involved head/neck mold and mask creation so that each time James goes in for treatment he'll be positioned in exactly the same way quickly/easily. I was sent out of the room but James told me after the fact that it was painful/stressful. He wasn't quite due for pain meds before we'd left so was overdue by the time he was taken back for the appt. In hindsight we should have thought to bring meds and he should have taken something for anxiety. The mask creation is a plastic mesh "plate" which is heated/softened and then pushed/molded over the face til the edges touch the table surface so it can be pinned in place during treatment. It put pressure on his already painful neck. If you have any issues with claustrophobia and/or anxiety about being unable to move I'd highly suggest taking an Ativan before having this done for head/neck treatment. The radiation technician was kind at least.
James treated himself to a Starbucks coffee after all was said/done. His new favorite post-treatment treat is a small dark roast, simple pleasures are key. I think it was being unable to have coffee for a few weeks or was it a month through surgery feeding tube etc. If looking for a gift for James a Starbucks gift card would be awesome for 7 weeks of daily treatments. I should probably check to see if they take traditional Starbucks cards first though since it's a little hospital kiosk. Hmmm.... maybe I'll buy the first card to check :^)
Today is a Saturday and we're relaxing at home waiting for the power to come back on. They're working on supplying internet to our wee town via Comcast (yes, we're one of those tiny towns....) so are doing work today on transformers and lines and poles. Good thing the suction equip has a battery back up! Next week we don't have any doctors appts other than the visiting nurse. Shocking. What will we do with ourselves???
Wednesday, February 14, 2018
Quiet is the new normal
James has been working a little with alternate methods of talking. In lieu of the voice prosthesis (while we wait for stoma to heal and possible HME to assist) the other method of speaking is to "swallow" a bit of air then "push" it back up (aka burping) using the air to speak. He's actually pretty good at it, one or two words at a time. I told him he'll be the favorite great uncle to all the wee boys and maybe girls too teaching them all to burp talk at family parties. The Moms and Dads will love us, I'm sure. Bro-Mark stopped by for a visit last night and they were reminiscing when kids about burping the word "rutabaga"... any other Mellors have memories of that? Too funny.
Any hooo we're pretty relaxed here in the house. We've been watching a LOT of the Winter Olympics. The athletes are pretty amazing and it's perfect timing for our current home bound care. Although today he went out to work for a bit and I did a little work at home. The visiting nurse has come and gone and can't believe how great he looks. We still need to put a few lbs back on (him not me) but all else is great.
Yesterday James checked in with his PCP, Dr. E. and he agrees all is good. Love Dr. E.
Tomorrow we see the Radiation Oncologist to begin set-up for radiation treatment which we think may start in 3 weeks or so?
We've asked for a new Medical Oncologist for chemo, the one that I'd selected as suggested by my Med Onc is not positive thinking enough for James so he asked the surgeon to suggest someone else. Nothing scheduled yet but it's in the works.
I'm lighting the torch now to make beads. Phoebe is in the kitchen planning dinner for us. James is relaxing in his easy chair watching TV and hooked up to humidity. It's a happy Valentines Day for us, hope it is for you too. Sending love and xxxxxxx Beth and James
Any hooo we're pretty relaxed here in the house. We've been watching a LOT of the Winter Olympics. The athletes are pretty amazing and it's perfect timing for our current home bound care. Although today he went out to work for a bit and I did a little work at home. The visiting nurse has come and gone and can't believe how great he looks. We still need to put a few lbs back on (him not me) but all else is great.
Yesterday James checked in with his PCP, Dr. E. and he agrees all is good. Love Dr. E.
Tomorrow we see the Radiation Oncologist to begin set-up for radiation treatment which we think may start in 3 weeks or so?
We've asked for a new Medical Oncologist for chemo, the one that I'd selected as suggested by my Med Onc is not positive thinking enough for James so he asked the surgeon to suggest someone else. Nothing scheduled yet but it's in the works.
I'm lighting the torch now to make beads. Phoebe is in the kitchen planning dinner for us. James is relaxing in his easy chair watching TV and hooked up to humidity. It's a happy Valentines Day for us, hope it is for you too. Sending love and xxxxxxx Beth and James
Sunday, February 11, 2018
He's out and about
James has been de-icing snow blowing sanding etc the past few days on/off. He says he feels better being upright and the humid air outside feels good breathing. Today he's out and about in the car, doing a little work for an elderly gentleman in town he assists and visiting people. I'm home working on bead stuff. We bought some tiny notebooks for his shirt pocket so he doesn't have to carry the huge clipboard everywhere. I'm going to make some little cards he can hand out, "Can't speak, will write" just need to figure out exactly what they should say, something short and sweet.
I made a big batch of gorp for quick calorie intake and energy. Phoebe made a delicious pot pie last night. This morning we had waffles with real syrup yum. I've got a batch of bread started and used the remainder of the Dije chicken for chix salad in the fridge, again quick easy food. We have a freezer full of ice cream not sure why. I'm contemplating oatmeal cookies. My goal is getting him to gain 30lbs back without me doing the same. Tricky.
A fairly quiet weekend which is nice. Hope yours is too!
I made a big batch of gorp for quick calorie intake and energy. Phoebe made a delicious pot pie last night. This morning we had waffles with real syrup yum. I've got a batch of bread started and used the remainder of the Dije chicken for chix salad in the fridge, again quick easy food. We have a freezer full of ice cream not sure why. I'm contemplating oatmeal cookies. My goal is getting him to gain 30lbs back without me doing the same. Tricky.
A fairly quiet weekend which is nice. Hope yours is too!
Saturday, February 10, 2018
Yeehaa
Yesterday we went to meet with the surgeon, Dr. V., and James had a long list of questions including when does feeding tube come out, when can I start eating again, when will prosthesis be placed, etc. Dr. V. rushes in an hour late which is his norm because he stays with you for as long as you need in your "20 min" appointment. Before James asks a thing he sits James in the med chair grabs a surgical kit and gets to work. Within 10 minutes....
The feeding tube is OUT!! The pen cap catheter is OUT!! The prostheis is IN!! Wahoo!!!
James can eat anything. Absolutely anything. His appetite doesn't seem to be what it is but I also need to get to work creating interesting things to eat. Our kitchen is currently dysfunctional as it was only Phoebe and I eating and we've been grazing. Time to clean up and make a little somethin-somethin. James' sweet sister baked a chicken dinner for us a night or two ago––absolutely perfect timing, thanks Dije––I may take the remainder to morph into a chicken pot pie. One of James' favorites. We'd share the pot pie baked by sweet neighbor Jess last week but Phoebe and I baked/ate/as soon as it was dropped off whoops.
The voice prosthesis will be a work in progress. It's a tiny plastic device that redirects the air from the trachea through a one way valve to the esophagus. The way you redirect the air is to block the stoma so the air is forced through the valve. James' stoma is quite low due to the size of the tumor. It sits in the notch at the base of his throat. He had more success swallowing air to create sound. He'll keep messing around with it but for now written word communication is easiest. Speach will hopefully be easier if/when an HME (heat and moisture exchange) device is placed.
We see Dr. V. again in a couple weeks when we'll discuss the HME which will help with speech but more importantly temperature/humidity control and also serves as a filter. Currently James is still hooking himself up to the humidifier unit by hose to stoma mask to keep things moist. There is still swelling and wounds are healing around the stoma so it's too early for the device. Crossing fingers that placement will work in his particular case (stoma placement, low, near clavicle) and that insurance won't give us any grief.
We have an appointment to see the PCP next week, the visiting nurse will visit, we have an initial appointment with the Rad Onc and they're booking an appointment with a Med Onc. Chemo and radiation were expected to start 6 weeks out, I think from surgical date so we may be getting close.
While I was chatting with the nurse in Dr. V.'s office about supplies we needed for the house James was asking Dr. V. the remainder of the questions so I was out of the loop but James told me after we'd left that Dr. V. thinks he got all the nearby lymph nodes and as previously mentioned margins were clear around the tumor. Looks like we're in pretty good shape moving forward with treatment!
Next steps will be bulking James back up again (he'd lost 30 lbs prior to surgery) and regaining physical strength. We'll be making lot's of smoothies with the weight gain protein powder and if you'd been dying to cook something yummy for us maybe now is the time :^) We need to whet his appetite!!
Thanks for thinking of us. xxoo Beth and James
The feeding tube is OUT!! The pen cap catheter is OUT!! The prostheis is IN!! Wahoo!!!
 |
| Feeding tube OUT.... real food IN.... wahoo!! |
The voice prosthesis will be a work in progress. It's a tiny plastic device that redirects the air from the trachea through a one way valve to the esophagus. The way you redirect the air is to block the stoma so the air is forced through the valve. James' stoma is quite low due to the size of the tumor. It sits in the notch at the base of his throat. He had more success swallowing air to create sound. He'll keep messing around with it but for now written word communication is easiest. Speach will hopefully be easier if/when an HME (heat and moisture exchange) device is placed.
We see Dr. V. again in a couple weeks when we'll discuss the HME which will help with speech but more importantly temperature/humidity control and also serves as a filter. Currently James is still hooking himself up to the humidifier unit by hose to stoma mask to keep things moist. There is still swelling and wounds are healing around the stoma so it's too early for the device. Crossing fingers that placement will work in his particular case (stoma placement, low, near clavicle) and that insurance won't give us any grief.
We have an appointment to see the PCP next week, the visiting nurse will visit, we have an initial appointment with the Rad Onc and they're booking an appointment with a Med Onc. Chemo and radiation were expected to start 6 weeks out, I think from surgical date so we may be getting close.
While I was chatting with the nurse in Dr. V.'s office about supplies we needed for the house James was asking Dr. V. the remainder of the questions so I was out of the loop but James told me after we'd left that Dr. V. thinks he got all the nearby lymph nodes and as previously mentioned margins were clear around the tumor. Looks like we're in pretty good shape moving forward with treatment!
Next steps will be bulking James back up again (he'd lost 30 lbs prior to surgery) and regaining physical strength. We'll be making lot's of smoothies with the weight gain protein powder and if you'd been dying to cook something yummy for us maybe now is the time :^) We need to whet his appetite!!
Thanks for thinking of us. xxoo Beth and James
Wednesday, February 7, 2018
Still here and dinner time, yum.
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| Dinner time for James |
I think I'd mentioned that he sets himself up. The hospital had him on a strict schedule 12 hours overnight continuous feed but he's just been hooking himself up on/off during the day as he feels hungry. We have an appointment Friday with the surgeon and hope/pray that the feeding tube will come out. He's about ready to be done with it although UPS just delivered a month supply of the liquid "food". The hospital formula smelled just like vanilla cake batter, I can't quite place this one. It's a bit like a beige sludge and very sticky. I tried to help refill at 3 a.m. night before last and forgot to open the top of the bag so poured the sticky goo all over pole bag Joey cords humidity hose plugs cords floor yikes. Nothing like a little 3 a.m. clean up on aisle 5. James doesn't ask for my help with THAT any more.
The steri-strips running down both sides of his neck fell off today. His neck is looking good and the stitches healed nicely. Baby steps to our new normal.
Thanks today to Jessica Hart for snow blowing for us. I was out shoveling and the snow was like a wet cement. Freezing rain had started mid way through the storm and was weighing everything down.
James had a fairly restful day, he's sitting in his comfy chair now having "dinner" working on the crossword. He's come up with a solution for the endlessly running nose (don't think I'd mentioned this yet? we hope it's from the feeding tube and not permanent...) he neatly rolls a couple tissues as plugs. Interesting look. I took the photo before tissues were in place. I suggested mini marshmallows may be a nice fit. He thinks not.
Tomorrow the visiting nurse visits again if it's not too icy. We were going to play it by ear based on weather. Other than that it may be a quiet day. Probably a little more snow related clean up. I want to make notes for the surgeon on Friday. Best to be prepared so that we don't miss anything!
Thanks for checking in. xxoo Beth and James
Monday, February 5, 2018
Surge of energy
Suddenly James was up vacuuming house then sanding outside for the visiting nurse. He says he feels better breathing being up and about, "stuff" doesn't settle as much. Okey Dokey. Let's see how it goes! Hopefully it'll keep the pipes clear and I'll just continue cleaning up the outer crusty bits.
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
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
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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