July 2014

Happiness is accepting that -
It Is What It Is

Getting closer but still working on this so it's staying at the top of the page for another month.

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 07//01-02/14- Mayo Clinic: Happy Dance Time AgainHappy Dance Again
Ok, this is the LONG TERM happy dance - home for a long, long time this round :))  Ya'all keep smiling and we'll start handing out some of our own - we'll be the masked couple with the twinkle in their eyes :)))
07/01 - Ok, the nutrition misunderstanding is resolved and nutrition gave us their blessing so we go home either this afternoon after the bronc or tomorrow, not sure which yet. We got the signals crossed on the bronc, no one told us we were having one so we ate. At 10 the NP came in and said we were scheduled for a bronc - oops you ate, ok 3:30 this afternoon and then you can go home after the bronc or tomorrow (the 2nd). Being experienced (that's a nice way of saying old hands at this going home stuff) we figured morning and fresh would be a better time to get home than late, tired and drugged from the bronc. The 'getting home' part is a project in and of itself. The frige is empty and needs restocking, the meds have to be organized (the weekly dose box we use emptied, pills put back in the bottles and then start over with the new meds and schedules. The Dosecast, a iPhone program that we use for medication reminders and a record of what she took when, also needs to be updated. Sounds simple, but when you have 25 different medications varying from once to 3 times a day, it can be a task getting it organized and staying on top of it. Our experience so far has been an hour or two just getting that portion taken care of.. So I headed home to get some preliminaries done, needed to install the Matress Genie, change the sheets and get a little business work done  I think this time we're much better prepared for home - the first time we were caught off guard and didn't realize how much was involved in setting up and tracking the meds. We also have to track everything and send in a weekly report so that's also a spreadsheet that I have to get updated. They monitor, weight, morning & evening temp, blood pressure and we have that nifty spirometer gizmo that we also have to track every day as well as all the medications with how much and when. The second attempt was the fiasco with the Marinol, and she was starting to reject before we even left the hospital but no one saw it yet. This time, she's on the mend, she's gaining weight 93.3 this morning :)), and we have a solid plan to keep going in that direction. Hopefully we've paid our dues now, PTB is going to smile and our next hospital stay will be years down the road. Next update will be from HOME!!
07//02-03/14- HOME AT LASTHoney's home
Sheila is still not able to do a lo yett but she's starting to do what she can now - a little at a time. Dishes are a never ending chore lol. We're home, we're together, we're learing to deal with the new  things in our lives. We're still smiling - Live Is Good :))
The 2nd flew by in a blur of activity, getting out of the hospital, picking up meds at the pharmacy, getting home, getting settled, setting up the new pills, and etc. Still don't have everything set up today, but we're getting there slowly but surely. We have what we need set up, we'll get to the it's nice to have over the next day or two. Morning was a good choice :))

Eating has become a critical issue at this point, so we're working hard and being sure honey gets enough to eat each day. We're tracking the calories and the protien. Calories are energy, protien is the building block for new muscles. Most of the past two months have been spent in the hospital so we're expecting there to be at least 2 or 3 months now recovering and regaining the muscle that she lost there. They do encourage the patients to walk as much as possible, but with the constant traffic, meds, testing and the lack of sleep (11pm to 5am is the quiet time - sometimes) the energy necessary to do much just isn't there much of the time. The menu is also not filled with high protien items for vegetarians, and the supplements that they had available and additional powders to add where not sitting well with Sheila's taste buds. The nausea also has only been gone for a couple of weeks and that's not enough time to really make much headway. Now that we're home we're hoping that we can get her on better solid foods, Tofu, Seiten and some of the beans that we really like. Today, we jointly made a pot of beans - she cut up the carrots, celery and I did the onion. We mutually put it together, and it was really good on top of Quinona. All of it stuff that wasn't available in the hospital, and tonight we'll top that off with a 570 calorie, 35gms of protien in a chocolate shake I'll blend for us (a cup of chocolate ice cream, a cup of milk and a protien additive (to get the protien count up). We're also doing a can of Nepro overnight with the feeding tube for now. All together that comes to around 70 protiens and 2000+ calories a day. That's helping her get some energy up and as her ability to exercise increases so will (I believe) her appetite. Today we hit 2210 calories and 82 gms of protien.
07/04/14 - HAPPY 4TH OF JULY -
Freedom is best when given to others.
We can do big things when we all work together!
A change of topic for today. As we celebrate the birth of our nation let us remember that freedom means you are free to respect others freedom! It doesn't mean you are free to tell others how to think or what to do.

Ok, soap box is stored for the day. On to more interesting topics - 93 pounds today, which is a gain is 1/2 a pound since yesterday. We're starting from our first morning home since we don't know how our scale compares with the one at the hospital. I think the first morning home was also a gain, but we can't compare apples and oranges other than saying they're both fruit lol. So our starting point will be 92.5 which was the first weight after getting home.

On the other side of the spectrum, I'm going down (157.5 first morning home) and 156.5 today. It would be a lot easier if I could just will it off me and onto Sheila, but we haven't mastered that yet, so I'll continue skipping a little and she'll continue adding a little more to the input and before you know it we'll both be back where we belong :)).

I think at this point I'll slow down on the updates unless something of note comes up. We're home, we're working first on getting some weight and muscle back and on starting to get her activity level up. It will be a slow process, but we'll get there. So I'm going to drop the daily updates and go with weekly or when something of note comes up. So till next week remember to keep the smiles flowing - we'll be watching for them to arrive here :))
07//12/14- TUBELESS!!! <[:~)}Tubeless
Sheila is minus the feeding tube - tubless :) - details to the right >>
It was a good week. 92.5 the day we got home, 95 today. The tube feeding has boosted her calories and protein up and she's been gaining steadily. Great news but not the big news for the week. Big news is that her feeing tube started acting up several days ago. It started coming loose at night - big mess, missed calories and getting us both up for 30 minutes in the middle of the night to fix it. So the 'fix' was to start taping the two parts together. This is a soft plastic tube on the end of the feeing tube and a hard plastic piece that plugs into it from the feeding bag. So anyway it's not working right and my idea of taping them together worked until last night. They came apart and taping didn't work so she didn't get her night feeding. So I call the people who supply the feeding bags and the pump and they say talk to the Dr. So we call and the Dr says come in, checks everything out and believes it's the soft plastic part is stretched out. We suggest removing it - hesitant and with several words of warning about needing to keep the calorie intake up he agrees. So tubes gone, now we just need to let her throat heal from the constant irritation the tube caused and stuff her full of high calorie meals and keep that weight and that healing going. We've both agreed that it's keep the calories up and the weight going back on or the tube goes back in. So the pressure is on again, but we both feel she can do it. She's back to cooking (good thing I'm not a great cook, putting it mildly), she's doing the dishes, laundry and other little house things. She's doing small work outs for her arms and upper body and her legs. Up the steps into the house slowly, but unassisted. So we've seen a lot of progress this week. Now we just need to insure that we keep that progress rolling. She's the best she's been since the surgery right now and we want to insure that she keeps heading in the direction she's going now.
Till next week - you're all in our hearts and thoughts. We're grinning from ear to ear - join us, it's a happy time :))))
07//21/14-  570 Calorie Milk  Shake Milk Shake
1 cup Chocolate Ice Cream, 1 cup Milk, 1 Unjury Supplement
Give the world a helping hand - be happy :))
Late on the update, just got very busy over the weekend and didn't get to it. Saturday a little business stuff and then all afternoon checking hydraulic fluid for the slides and the leveling jacks (and cleaning up the mess made by overfilling the slide reservoir). They put the reservoir behing the passenger side headlight (easiest way to describe the location) and so its in a location where you can't really see it, need a funnel to fill it and then lay on the ground and pour into the funnel - so doing it in the blind and unable to see that the funnel is filling up. A clear plastic funnel is on the shopping list for next time <:0. Sunday disappeared into the manual I'm writing for the Truckers Helper Online.

But on to the important things - 97 pounds this morning, so Sheila is continuing to put the weight back on. We're walking on the days she doesn't have rehab at the Mayo and she's doing a mile now at 2.1 miles/hour average. During the day she also does some little weights and is building back the muscle she lost in the hospital. She's also back to cooking (a very good thing) and doing most of the things she used to do as part of her normal routine at home. Of course we've also added a nap to the schedule as she does still wear down a little mid-day. Not sure if that's the recouping or just the fact that we're getting a little older :)) All in all it's been a very good week. This week we're meeting with nutrition to check on her progress, I'm sure they'll be pleased, and rehab M, W, F. We're starting to look towards the time when we can get out from under this schedule and head back to our home base - maybe start taking a few little trips and getting back into a more normal (for us) type of life. We've agreed to let the people who are currently in our spot stay till Sept 15th, but after that  we're hoping to be back on the river. That possibility improves with each day as she continues to recover. Life is good, we're smiling hope you are as well.
07/27/14- Breakfast at the Mayo Breakfast At The Mayo
One of our early morning fasting labs. We take our cereal with us and have it in the cafeteria :)) Our corner table is usually pretty isolated early in the morning so we demask and eat, then put them back on. 
Been a fairly quiet couple of weeks. Busy but quiet. I've set some deadlines for a few Truckers Helper Online things to get done, among them a manual for those who keep asking for it and since the manual is my part of this project it's been keeping me busy. I've finally finished the program setup section which turned into 82 pages, and that's just getting set up. No idea how much the rest of it is going to take, but I need to have it done by early October, so I'm hammering on that. Sheila had a busy week this past week, with Rehab Monday, Labs and a Bronc on Tues, then a meeting with gastroenterology in the morning and then the coordinator and the Dr. on Wed. The bronc went well, still some dead tissue in there and a sample from the bronc turned up a bacteria so they have started her on tobramycin which we mix with albuterol and then she takes it via her nebulizer twice a day. So another medication to keep track of and take :)  She's only been on it a couple days so too early to see any effects. She has been having some nausea again and just when that started the Dr who did the accupuncture called to see if she needed another treatment. She's got an appointment with him 8/15. But the big news is we'll be going away for a few days, 8/3 to 8/7. We're going to go down to Jetty Park and I'm going to go work at the office for a few days. There are some things I need to get together with the programmer on and otherwise just check in. Haven't been down there in months. Have to see if they still recognize me. It'll be nice to roll down the highway even if it's a short trip. We're both looking forward to a few days away from here and the Mayo. Then we're booked up again after we return. Another bronc 8/12 - that's my birthday present I guess, and several appointments on the 13th along with the coordinator and Dr for the post bronc follow up. She's going to do another month of rehab here, so that's 3 days a week and then we're planning, barring any unannounced changes in plans that the universe has planned, on leaving here 9/1 - but that's a month away and so we're not making any reservations just yet. Not a good idea to try to plan too far ahead - seems to much like offering Murphy a challenge :))) So we're good for now, taking it a day at a time and enjoying everything each day has to offer. Keep smiling out there and 'just keep truckin', we'll be joining you soon. 

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