Dmmetler Posted March 6, 2022 Author Share Posted March 6, 2022 Dad and I went down to the hospital this morning. We watched Derrick’s service with mom and then went to the cafeteria to get lunch and bring it back, so we could eat with her for the first time since December. (She got a Chicken Salad that looked absolutely wonderful, BTW. The cafeteria had beef tips over rice, plus the usual hamburgers, etc). Usual low key weekend, and extremely nice In that it’s closer to normal. L has made it to Belize for the Maritime ecology/cultures trip, and is having a great time, even though so far it has just been the shuttle bus and the ferry to the island 🙂. 14 Quote Link to comment Share on other sites More sharing options...
Dmmetler Posted March 6, 2022 Author Share Posted March 6, 2022 mom’s post This morning I woke up 5am,watched Asbury at 7:30am, moved to a chair ,about 9:30 am so Tom and Donna and could watch Derrick Parson at 10am at Providence UMC.net. We really like Derrick,s preaching but also he handles the offering. We don't want to miss the opportunity to give to Gods work through Prividence. Donna and Tom went to the cafeteria and brought back their lunches. I wish I had known what I was being served. Donna was envious of my large salad, which I maybe could appreciate in a couple more weeks. Just because I could pass a swallow test does not mean that my stomach is ready to eat every thin. The hospital really needs a plan to ease people who haven't eaten in a Month or 2 back into eating. Most meals I avoid meat because it gives such bad indigestion. Lettuce takes a lot of chewing with little return of calories, so I ate the chicken and few olives. My orange sherbet was more like an orange shake rather an milk. I ate it first. Life is short eat dessert first. 15 Quote Link to comment Share on other sites More sharing options...
Longtime Lurker Posted March 7, 2022 Share Posted March 7, 2022 1 hour ago, Dmmetler said: My orange sherbet was more like an orange shake rather an milk. I ate it first. Life is short eat dessert first. I love this 🙂 4 Quote Link to comment Share on other sites More sharing options...
Dmmetler Posted March 7, 2022 Author Share Posted March 7, 2022 The pulmonologist just came by-the trach will be leaving later today 🙂. 28 Quote Link to comment Share on other sites More sharing options...
Drama Llama Posted March 7, 2022 Share Posted March 7, 2022 Just now, Dmmetler said: The pulmonologist just came by-the trach will be leaving later today 🙂. Wow! That is fantastic news. Quote Link to comment Share on other sites More sharing options...
Kassia Posted March 7, 2022 Share Posted March 7, 2022 Yay! Wonderful wonderful news! Quote Link to comment Share on other sites More sharing options...
Dmmetler Posted March 7, 2022 Author Share Posted March 7, 2022 In mom’s words The pulmonologist came by and that they would be asking out the trach today. Then the P T said that I am probably moving to well for inpatient rehab and I will probably go straight home with Outpatient therapy. Tom had checked into medical flight when he thought that I might have to go to.facility in Fincastle which will take Teach patients. The quote from Memphis to Roanoke is about $15000. Sarah, the PT, said so should e able to handle first class on a commercial flight. She told us they usually release post Trach patients 48--72 hours later. Tom and Donna are estatic. I am perhaps understandably scared After 2 months of dependacy. I have to start taking responsibility again.I still.remember Ed Taylor's sermon "Do you want to healed?" 14 Quote Link to comment Share on other sites More sharing options...
Dmmetler Posted March 7, 2022 Author Share Posted March 7, 2022 Ok. We’ve now had the case worker come by. At this point, the plan is to discharge to home later this week, with continued outpatient therapy. Transportation is an issue, since commercial planes require an oxygen concentrator vs an O2 cylinder, and my mom both would have a hard time handling a 700+ mile drive physically and it would make them have to go the exact route the accident occurred on, something neither of my parents feel comfortable doing yet, and O2 concentrators are in short supply. However, a medical transport is an option, albeit a pricey one-but possible (and since a company that does the conversions is local to them, they can probably even land at the small local airstrip vs having to land at an airport). And, to be honest, when they did the trial on room air, she was maintaining in the low 90’s even without O2 support, so she may well not need oxygen, at least during the day, for much longer (her O2 tends to be a little lower when she’s lying down vs sitting up or moving, and she has had a CPAP for almost 20 years, so needing it at night wouldn’t be a big surprise). Anyway, this has been a rather overwhelming day. A good day, but a rather overwhelming one. This is a stage that we’ve been told for the last 2 months might not ever be possible. 16 Quote Link to comment Share on other sites More sharing options...
YaelAldrich Posted March 8, 2022 Share Posted March 8, 2022 I'm so happy for all y'all!! Quote Link to comment Share on other sites More sharing options...
Dmmetler Posted March 8, 2022 Author Share Posted March 8, 2022 And I’ve now talked to a medical supply company that can overnight us a concentrator if we can pay out of pocket and file for reimbursement. 6 Quote Link to comment Share on other sites More sharing options...
Drama Llama Posted March 8, 2022 Share Posted March 8, 2022 Will she go straight home or stay with you a little while? Quote Link to comment Share on other sites More sharing options...
Dmmetler Posted March 8, 2022 Author Share Posted March 8, 2022 9 minutes ago, Baseballandhockey said: Will she go straight home or stay with you a little while? It kind of depends on when she is released and airline schedules. Her house is honestly more accessible than mine, which is good-my parents have a low ranch, while mine has a lot upstairs. 2 Quote Link to comment Share on other sites More sharing options...
Dmmetler Posted March 8, 2022 Author Share Posted March 8, 2022 Well, we have good news and bad news. The good news is that mom will be discharged, likely Thursday morning. The bad news is that the doctor won’t clear her to fly home yet due to pressure changes. So, we’ve booked an accessible extended stay hotel room for them for a couple of weeks (the doctor said to book for 3, and cancel days if needed), and she’ll do outpatient therapy here, and then fly home when her lungs have had a little time to heal. 16 Quote Link to comment Share on other sites More sharing options...
vonfirmath Posted March 8, 2022 Share Posted March 8, 2022 Sounds like she'll have to keep reminding herself how far she's come a little longer before she can get where she wants to be :( Will continue praying. This is such GREAT news. 1 Quote Link to comment Share on other sites More sharing options...
NewnameC Posted March 8, 2022 Share Posted March 8, 2022 I’m sorry that this feels like a backward step to your parents, but from my experience with a family member, I think this is a much better option. One never knows what difficulties may crop up once she Is out of the controlled hospital environment. Hopefully, there will be no issues, but being close to the doctors and therapist she knows and are familiar with her case will be huge if there is an issue. Praying there will be no issues and the doctor is ready to release her to fly sooner than 3 weeks. (Your mom has been a rockstar, so there is no reason to think that won’t continue to true.) 6 Quote Link to comment Share on other sites More sharing options...
Dmmetler Posted March 8, 2022 Author Share Posted March 8, 2022 1 hour ago, NewnameC said: I’m sorry that this feels like a backward step to your parents, but from my experience with a family member, I think this is a much better option. One never knows what difficulties may crop up once she Is out of the controlled hospital environment. Hopefully, there will be no issues, but being close to the doctors and therapist she knows and are familiar with her case will be huge if there is an issue. Praying there will be no issues and the doctor is ready to release her to fly sooner than 3 weeks. (Your mom has been a rockstar, so there is no reason to think that won’t continue to true.) As the wound care nurse pointed out today, three weeks ago, they were thinking that she would be going to rehab, still on a vent at night and on tube feeding, so the fact that she’s now to the point that she can go to a non-medical setting full time in just a couple of days is amazing. And I agree that being close by the hospital and care team is probably a good thing right after discharge, just in case. I also think that an accessible hotel room is a nice intermediate step towards returning home, which will tend to keep her from overdoing it as much as she’d be likely to do at home, and give a chance for her and Dad to figure out what they can do (and how much help they might need) than it would be if they were at my house, but where I’m only minutes away so can still provide some support. 12 Quote Link to comment Share on other sites More sharing options...
Dmmetler Posted March 9, 2022 Author Share Posted March 9, 2022 Mom got to take a shower and get dressed today :). Her discharge may be delayed until Friday for the best of reasons-she is now maintaining 97-98% SpO2 on 1/2 l oxygen, so they're thinking they may be able to get her completely off oxygen (and have a reasonable observation period) by delaying a day. We will totally take that! And, being able to check out the hotel room and see what it has vs what it needs would be good, too. Friday is also a much, much lighter day for me. 23 Quote Link to comment Share on other sites More sharing options...
Dmmetler Posted March 11, 2022 Author Share Posted March 11, 2022 Mom is expected to be discharged tomorrow. The hotel room is a bit far away from the parking lot, so we’re a little concerned about that, but should work well for accessibility otherwise, and is close to physical therapy. We’ll likely still need to rent a car for Dad just for logistics reasons. Her CPAP arrived from VA. The pieces are coming together. It’s a little scary. 18 1 Quote Link to comment Share on other sites More sharing options...
LifeLovePassion Posted March 11, 2022 Share Posted March 11, 2022 Today's the day! The hotel may have a courtesy wheelchair to get her to and from the room. If you think she may need one and get tired easy, we purchased a basic one on Amazon for my mom for under $200. 2 Quote Link to comment Share on other sites More sharing options...
Dmmetler Posted March 11, 2022 Author Share Posted March 11, 2022 1 hour ago, LifeLovePassion said: Today's the day! The hotel may have a courtesy wheelchair to get her to and from the room. If you think she may need one and get tired easy, we purchased a basic one on Amazon for my mom for under $200. I think she’s going to need one in the short term at least. If you can walk at least 100 steps (with a walker) and do basic self care, you are discharged fo home with outpatient therapy, but the fact is, even though she’s done more than that with the PT, it wears her out. And that’s going to be met or exceeded every time she goes to/from the hotel room, or really, anywhere. Insurance wouldn’t cover the rolling walker with a seat the PT recommended, which would have let her stop, sit, and rest more easily. i don’t think she’ll need one long-term, or that she’ll need one in the hotel room, but for longer trips, and by longer, I mean like anything outside the hotel room, I think she really does. It very much feels like as soon as she met the standards such that she didn’t qualify for rehab, we’re on our own, and that’s terrifying. 7 Quote Link to comment Share on other sites More sharing options...
Amethyst Posted March 11, 2022 Share Posted March 11, 2022 I hope everything goes well today! The hotel seems like a really good intermediate idea. Quote Link to comment Share on other sites More sharing options...
Dmmetler Posted March 11, 2022 Author Share Posted March 11, 2022 It’s coming together. We picked up a whole sack of prescriptions and mom says the walker, nebulizer, and two oxygen bottles have been delivered to her room. We have a wheelchair reserved to rent for a month (which is like half the cost of just buying a transport chair, but oh, well….). We stocked the refrigerator in the hotel room. I am totally exhausted. 19 Quote Link to comment Share on other sites More sharing options...
Frances Posted March 11, 2022 Share Posted March 11, 2022 So glad your mom is settled. I hope you will be able to get some rest soon. 1 Quote Link to comment Share on other sites More sharing options...
Scarlett Posted March 11, 2022 Share Posted March 11, 2022 45 minutes ago, Dmmetler said: It’s coming together. We picked up a whole sack of prescriptions and mom says the walker, nebulizer, and two oxygen bottles have been delivered to her room. We have a wheelchair reserved to rent for a month (which is like half the cost of just buying a transport chair, but oh, well….). We stocked the refrigerator in the hotel room. I am totally exhausted. I bet you are exhausted. How long will she be in the hotel? Quote Link to comment Share on other sites More sharing options...
Dmmetler Posted March 11, 2022 Author Share Posted March 11, 2022 Just now, Scarlett said: I bet you are exhausted. How long will she be in the hotel? The pulmonologist is thinking 2 weeks or so before it’s safe to fly home to VA. 1 Quote Link to comment Share on other sites More sharing options...
TravelingChris Posted March 11, 2022 Share Posted March 11, 2022 On 3/4/2022 at 7:04 AM, Dmmetler said: One of her friends posted about Lent on FB, and mom commented “not fasting this year-I only just got to eat!” I figure she’s covered for this year. Maybe the next two or three…. Nothing to do with your Mom, but I normally try to do something more for people and sometimes give up something. Really couldn't manage anything this year from Ash Wednesday. I just was happy to go to church in person on Sunday. And with my bad to extremely bad diagnosis that I found out about on this Tuesday and hopefully will be getting a bad to extremely bad diagnosis at the end of the month--- bad is having not great vision that I have right now and it only getting a bit more bad, and extremely bad is that I am going blind, plus my horror at Ukraine, where my mother and her parents and family lived until WWII, I haven't been able to get anything together this year. I believe God understands. 2 6 Quote Link to comment Share on other sites More sharing options...
Kassia Posted March 11, 2022 Share Posted March 11, 2022 ((( @TravelingChris ))) 1 2 Quote Link to comment Share on other sites More sharing options...
Dmmetler Posted March 12, 2022 Author Share Posted March 12, 2022 Mom is officially out of the hospital, and moved into the hotel, after a ton of running around and moving parts to coordinate. We have a rented wheelchair (which is coming in handy because it’s easier to get out of than the other chairs in the room), her walker, tons of medications, her CPAP and the oxygen concentrator. Overall, she seems to be getting along pretty we,l and is in a good mood, but I think we’re all very, very tired. Plus it’s snowing. 23 Quote Link to comment Share on other sites More sharing options...
Dmmetler Posted March 13, 2022 Author Share Posted March 13, 2022 We took a gluten free dinner over to eat with Mom and Dad today, along with an orange Slurpee. She's moving better today. The hotel seems to be working fairly well, although the kitchenette is less useful than hoped, and the concentrator is annoying to deal with. The snow mostly has melted, at least on the roads. We pick up L at the airport in about an hour. 18 Quote Link to comment Share on other sites More sharing options...
Kanin Posted March 13, 2022 Share Posted March 13, 2022 20 hours ago, Dmmetler said: We took a gluten free dinner over to eat with Mom and Dad today, along with an orange Slurpee. She's moving better today. The hotel seems to be working fairly well, although the kitchenette is less useful than hoped, and the concentrator is annoying to deal with. The snow mostly has melted, at least on the roads. We pick up L at the airport in about an hour. Wow! What a whirlwind. It's crazy how she can go from being in a hospital and watched all the time, to on her own in a hotel room. Just wow! How's your dad holding up? I hope they can both rest at the hotel. I wonder if they'll both be stir crazy soon 🙂 3 Quote Link to comment Share on other sites More sharing options...
prairiewindmomma Posted March 14, 2022 Share Posted March 14, 2022 On 3/11/2022 at 12:26 PM, TravelingChris said: Nothing to do with your Mom, but I normally try to do something more for people and sometimes give up something. Really couldn't manage anything this year from Ash Wednesday. I just was happy to go to church in person on Sunday. And with my bad to extremely bad diagnosis that I found out about on this Tuesday and hopefully will be getting a bad to extremely bad diagnosis at the end of the month--- bad is having not great vision that I have right now and it only getting a bit more bad, and extremely bad is that I am going blind, plus my horror at Ukraine, where my mother and her parents and family lived until WWII, I haven't been able to get anything together this year. I believe God understands. Hugs, Chris. 1 Quote Link to comment Share on other sites More sharing options...
prairiewindmomma Posted March 14, 2022 Share Posted March 14, 2022 Concentrator > oxygen tanks, any day of the week. All of it is annoying, but I hated swapping tanks and gauging life around how long a tank would last. I am glad you have backups for the concentrator, though, especially as winter seems to be hanging around. Fingers crossed your mom can be done with all of that soon!! 1 Quote Link to comment Share on other sites More sharing options...
Dmmetler Posted March 14, 2022 Author Share Posted March 14, 2022 We had Dinner with mom and Dad (from Taziki’s, which is one of L’s favorite places) and L shared Belize pictures. Mom is eating better and seems to be feeling better, too. Tomorrow, I’ll pick Dad up so he can get a rental, and Mom has a pulmonologist appointment in the afternoon. Right now we only have the big, must be plugged into the wall concentrator, so anything portable needs the tanks. Apparently the small concentrators are hard to come by right now. 14 Quote Link to comment Share on other sites More sharing options...
Amethyst Posted March 14, 2022 Share Posted March 14, 2022 That’s great to hear she’s eating better. (I love Taziki’s too!) I hope that you are able to get some rest. Your mom is doing amazing. I’m sure she’s eager to get home. Quote Link to comment Share on other sites More sharing options...
Dmmetler Posted March 15, 2022 Author Share Posted March 15, 2022 Mom has been cleared to return to VA. It will probably take about a week to get the moving parts set up as far as tickets, oxygen concentrator (we’ll likely have to buy one due to the difficulty in doing a rental between states), and getting all the medical paperwork and support needed, but they will hopefully be going home next Tuesday or Weds. Dad and I picked up a rental van this morning, so they now have transportation, and The oxygen company brought over a portable battery operated concentrator to use locally, so they came over to my house after the appointment for dinner, which was nice. 19 Quote Link to comment Share on other sites More sharing options...
Dmmetler Posted March 15, 2022 Author Share Posted March 15, 2022 Mom’s post from today We have a flight scheduled to land in Charlottesville. at 5:09pm on Weds March 23. We need to.arrange for oxygen.The pulmonologist said that he write a letter of need. Delta upgraded us to Co!fort class.atno.extra.charge. We waited very long time.for.am accessibility specialist, but she waa very helpful. I drove L a couple of hours to see long time BFF (who is not only not on Spring break this week, but smack in the middle of midterms, so carving out a couple of hours was the best we could manage). It is weird to be going largely out of contact without really worrying about my parents, after the last few months. 10 Quote Link to comment Share on other sites More sharing options...
Dmmetler Posted March 16, 2022 Author Share Posted March 16, 2022 Today’s challenge-getting a rental oxygen concentrator for the plane. We think we have everything figured out once we get a prescription/letter from the doctor. Mom has PT and OT appointments tomorrow. She’s getting around much better than she was even a few days ago. 11 Quote Link to comment Share on other sites More sharing options...
Dmmetler Posted March 18, 2022 Author Share Posted March 18, 2022 Well, apparently the doctor has requested an oxygen concentrator that doesn’t exist. Hopefully, we can get a revised prescription without too much trouble. 3 Quote Link to comment Share on other sites More sharing options...
Amethyst Posted March 18, 2022 Share Posted March 18, 2022 32 minutes ago, Dmmetler said: Well, apparently the doctor has requested an oxygen concentrator that doesn’t exist. Hopefully, we can get a revised prescription without too much trouble. What a nuisance! Quote Link to comment Share on other sites More sharing options...
Dmmetler Posted March 18, 2022 Author Share Posted March 18, 2022 They’re supposed to send in a revised one. Apparently it’s not uncommon (the standard rule of thumb is to double oxygen concentration in flight. We need the concentrator to get here no later than Tuesday. Hopefully it will work OK. Mom likes the OT and PT and has several sessions set up before heading back. And then will need to get a new prescription once home, but it’s giving her something to do. 5 Quote Link to comment Share on other sites More sharing options...
Dmmetler Posted March 18, 2022 Author Share Posted March 18, 2022 we got the approval and shipping information on the concentrator (BTW, it costs $275 to overnight an O2 concentrator!) for the plane. (The local medical supply company will handle the O2 prescription once they’re home). So, the last piece is in place for my parents to be able to go home. 21 Quote Link to comment Share on other sites More sharing options...
Dmmetler Posted March 20, 2022 Author Share Posted March 20, 2022 We now have travel set all the way back to Harrisonburg for Mom and Dad for Weds, with the only thing still hanging is waiting for the O2 concentrator to arrive Monday, and returning some of the rented stuff here (probably after they go home). Today they came over, had dinner, and went through mail, cards, etc, to figure out what is going home (either in a suitcase or by mail) and what doesn’t need to travel. L travels back to Agnes Scott tomorrow, too. It’s been a relatively relaxing Spring break after a very intense Winter. 17 Quote Link to comment Share on other sites More sharing options...
Dmmetler Posted March 21, 2022 Author Share Posted March 21, 2022 Mom’s post from today We went over to Donnas so Tom could log into the National ACS meeting to give his presentation.Donna and Mike left to take L to the air port.. L is now at Agnes Scott College to begin the second semester.. We went to Longhorns about 4pm. They had an hour wait so we went to MC McAllister s. It was the first time i had been anywhere besides Donna's and St Frances Rehab Center. While Tom was in WalMart, Zack and Jo Beth called and reminded me that today is her birthday. Whoops! 6 Quote Link to comment Share on other sites More sharing options...
Scarlett Posted March 21, 2022 Share Posted March 21, 2022 I am so glad she is doing so well. My mom had a good 6 months of painful hand therapy and rehab…and her hand will never be the same…..but she only spent 10 days in ICU/rehab. That was bad enough so I really feel for what you have gone through. Quote Link to comment Share on other sites More sharing options...
Dmmetler Posted March 21, 2022 Author Share Posted March 21, 2022 Does anyone know if the kind of things that you do to improve breath support for music would be helpful for regaining lung capacity and breath support in general? My mom really wants to get her singing voice back, and it kind of feels like they're focusing on physical therapy (with the goal of regaining activity) but dropped speech once she could swallow and manage a mostly regular diet. From my POV (as a musician and music teacher) it seems like working on breath support would be helpful, both for singing in specific, but also just for breathing at this point. Quote Link to comment Share on other sites More sharing options...
Terabith Posted March 21, 2022 Share Posted March 21, 2022 1 hour ago, Dmmetler said: Does anyone know if the kind of things that you do to improve breath support for music would be helpful for regaining lung capacity and breath support in general? My mom really wants to get her singing voice back, and it kind of feels like they're focusing on physical therapy (with the goal of regaining activity) but dropped speech once she could swallow and manage a mostly regular diet. From my POV (as a musician and music teacher) it seems like working on breath support would be helpful, both for singing in specific, but also just for breathing at this point. I don’t know for sure, but I can’t imagine it would hurt, and it seems reasonable that it would help? 1 Quote Link to comment Share on other sites More sharing options...
eagleynne Posted March 21, 2022 Share Posted March 21, 2022 1 hour ago, Dmmetler said: Does anyone know if the kind of things that you do to improve breath support for music would be helpful for regaining lung capacity and breath support in general? My mom really wants to get her singing voice back, and it kind of feels like they're focusing on physical therapy (with the goal of regaining activity) but dropped speech once she could swallow and manage a mostly regular diet. From my POV (as a musician and music teacher) it seems like working on breath support would be helpful, both for singing in specific, but also just for breathing at this point. Former respiratory therapist here, it would help. Also, oddly enough, playing the harmonica helps a lot. Really any instrument you blow into helps, but harmonicas are best because you both blow air into- and suck air through them. 3 Quote Link to comment Share on other sites More sharing options...
Dmmetler Posted March 22, 2022 Author Share Posted March 22, 2022 Sigh….the concentrator isn’t here yet. It needs to get here so we can return the other one locally. And charge the batteries. And…well. It just needs to get here. 1 2 Quote Link to comment Share on other sites More sharing options...
Harriet Vane Posted March 22, 2022 Share Posted March 22, 2022 12 hours ago, Dmmetler said: Does anyone know if the kind of things that you do to improve breath support for music would be helpful for regaining lung capacity and breath support in general? My mom really wants to get her singing voice back, and it kind of feels like they're focusing on physical therapy (with the goal of regaining activity) but dropped speech once she could swallow and manage a mostly regular diet. From my POV (as a musician and music teacher) it seems like working on breath support would be helpful, both for singing in specific, but also just for breathing at this point. Yes, definitely. Do singing exercises, play a wind instrument, consider athletic breathing training devices, work up to doing some sort of aerobic exercise even if it's gentle and slow. Others have answered similarly, but I will add one definite thought. PT and OT can only restore "normal" function as defined by the insurance providers. They really don't work towards excellence. It's not the PTs' fault; they're not allowed to really go for it. So always assume that more and longer is better and that every single step you take towards building strength in any area is better. For background, I was "graduated" from PT when I still had significant balance and gait issues. It was based on the time I had been in PT (number of weeks) and on the fact that I had "improved." I chose to pay out of pocket for quite a while longer to work with a trainer to get to actual strength and balance rather than merely "sufficient." I have had to have a fair amount of PT due to a chronic connective tissue disorder, so I am all too familiar with the limitations of prescribed PT. My take-away: Fight insurance to get as much as you possibly can for your mom, and assume that more/longer is definitely beneficial. 2 Quote Link to comment Share on other sites More sharing options...
YaelAldrich Posted March 22, 2022 Share Posted March 22, 2022 Prayers for a respirator to appear right quick! Quote Link to comment Share on other sites More sharing options...
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