Tuesday, 24 July 2012

More steps in the right direction

The Smaller Portion (currently known as the Skinny Portion) is home.  He came home late last Thursday and so far all appears to be going well.  He is even eating without the assistance of the looming penguin.

The hospital professed themselves concerned about the amount of weight he lost while in their care.  Huh?  With the exception of three and a half days he was in hospital from June 19th to July 19th.  For the vast majority of that time he was on nil by mouth.  He had three general anesthetics and two operations.  Of course he lost weight.  Lots of it.  His shoulder blades could be used as a knife at the moment.  He was told that he was discharged with support from a dietician in the community.  So far this support has been conspicuous by its absence despite two phone calls from us. 

His sister is still with us, and there has been no date set for her return to her family.  Last time she set a date she had asked her brother if she should go and he, lying like a pig in mud, had told her he was fine.  The next day I woke her at around six to get her to take us to hospital.  I suspect she is going to be a great deal more cautious this time.

I have had the medical appointments this week.  Two of them.  Sigh.  My thyroid medication has had to be increased and will probably be increased again.  And, (joy and bliss) the specialist told me that since I now have MS and a hypothyroid I could expect to add other auto-immune disorders to the pile.  The next appointment was with my neurologist.   He wants me to get the thyroid medication right and then go back to him.

While I was seeing him the skinny one and his sister went down to the lake.  They saw very few kangaroos - perhaps because tourists were chasing the ones they did see, but were rewarded with lots of black swans, a moorhen or two, a bearded raven and the obligatory seagull.  I would be very surprised if many of our seagulls have ever seen or will ever see the ocean.



Moorhen



Bearded Raven.



Some of the swans were being a tad pugnacious.  I was told that the tail pulling continued for a surprising distance.




For sheer aggression the seagull won the prize of the day.




We have been told that the Smaller Portion will need at least one and more probably two operation to get him to the desired bagless state.

In a fortnight we have an appointment with the surgeon who performed the unsuccessful ileostomy reversal.  I have a question or six I would like to ask.  The following week we have an appointment with the surgeon who restored the ileostomy and who will be performing, if it is possible, future operations.  I have a few questions about that too.

So it is building up time.  And hopefully some resumption of normality before we launch ourselves into hospital mode again.


61 comments:

  1. What a terrible time you are having.. I really worry about the medical profession. You hardly ever hear of 'them' getting it right. Take care. xi

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    1. Lydia La La: True, it hasn't been a whole lot of fun. However bad news travels a great deal faster than good news so I still hope that there are more good than bad outcomes. Thanks for your good wishes.

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  2. Our support, love, and admiration are with you!


    Sincere Aloha from Honolulu
    Comfort Spiral
    <(-'.'-)>

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    1. cloudia charters: Thank you. Support and love are always welcome.

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  3. Oh, good gravey, what a mess you have gone through! Make yourself a list of your questions. A copy for yourself and a copy for the doc(s) to answer. I have learned that it works much better when the surgeons see it in writing instead of just hearing the question. The majority tend not to communicate well.

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    1. DahnStarr: The list of questions is a very good idea. I plan on giving each of the surgeons a list of the questions I have or will ask the other as well. You are far too right about their communication skills. Communication in this hospital stint ranged from rotten to appalling.

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  4. Oh gosh, so sorry to hear about your medical problems as well as those of your other half.

    Much love and hugs to you both.

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    1. ladyfi: Thank you. Love and hugs received and passed on.

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  5. I need a lie down after merely *reading* about what you and the SH have gone through and are about to endure. Write those questions down on a sheet of paper and take them with you during your next appointment. That way they won't bustle you out before you've had a chance to think....

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    1. Kath Lockett: Wine o'clock has been our friend. Each evening his sister and I allow ourselves a glass of wine. We then share another one - for him you understand.

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  6. O The E's C, this must really be taking it out of you both. I so want this to be over for you both . . . and I've been moaning about a mere headache!
    Pleased to hear SO got out to the lake. I just hope and pray everything goes as smoothly as possible for you both.
    I thought of you yesterday when I was gardening . . . and beating myself up ;-)
    Thoughts, love and hugs to you both x x x

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    1. bugerlugs63: We have everything crossed that all future steps are in the right direction.
      I don't like the sound of you beating yourself up. Again. I will check that out shortly.

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  7. Somehow I missed the penguin story from before - love seeing pics of it and the Skinny Portion!

    I'm glad things are going in the right direction, my friend. Yes - write those questions down. Health care professionals can be so elusive, seems like.

    I've never seen an actual black swan. You live in a wonderful of beautiful wildlife.

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    1. Lynn: We love our black swans but they are very greedy and have serrated beaks which can come as a shock.

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  8. I'll bet he is SO glad to get home. Sometimes things just seem to keep coming at you don't they? Fingers crossed for "calmer weather" for your life.

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    1. mybabyjohn/Delores: He is really, really happy to be home. And the bigger of our two cats is really, really happy to see him as well.

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  9. Oh boy!
    What ordeals you have been enduring, and it seems there are more to come. No wonder the weight has been melting away like butter out in the sun. One must keep hoping, of course, and at least, it seems, your doctors are doing that. I am glad to get your update, and it must be good to be back home for a while at least, instead of that endless to-ing and fro-ing to the hospital. Writing down the questions sounds like a very good idea.
    I have been thinking of you and wondering how you all were. I hope the thyroid settles down. My own dosage got reduced recently, much to my surprise - I had assumed it was a constant.

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    1. persiflage: I am very glad to give up the to and froing to the hospital. For the moment at least. We will have to put our heads together about the questions, but I think it will be time well spent.

      Interesting that your dosage of thyroid medication got reduced, the specialist indicated to me that it would only go up.

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  10. All of you have been through a simply awful string of luck but hopefully the bad is all used up and there's only good down the road. I sincerely hope so! Always a delight to see your birds again. Most of our gulls never see the sea either but then we do have the Great Salt Lake as a substitute...

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    1. Ron Dudley: I like the idea that all of our bad luck has been used up. Hopefully you are right. And yes, the birds are always a joy.

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  11. Sorry you are having so many stresses of late. Wine o'clock sounds like good wind-down therapy. Those swans are gorgeous. I remember we had some at a nearby seaside town in the UK back in the day. I loved to watch them. Wishing you both better days ahead and sending love and a big hug.

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    1. Denise: Wine o'clock is brilliant wind down therapy. It is also a signal that nothing else will happen for the day - a stop sign as it were.

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  12. This has been quite the slog for both of you. I hope the worst is past and the going easier.

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    1. Joanne: It hasn't been easy, and I am anxious to hear what the specialists have to say ...

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  13. Life seems very difficult for you right now and you have a long road ahead of you. Stay strong.

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    1. Starting Over, Accepting Changes - Maybe: Thank you. I will do my best.

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  14. Sorry to hear about the MS, I hope you aren't too uncomfortable or inconvenienced with it. I hope the smaller, skinnier portion continues to improve. How could the dietician not be in contact with you, he/she is neglecting her duty there.

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    1. River: I hope that the smaller, skinnier person does continue to improve. He/we are going to need all of our strength in the coming months.
      You are so right about the dietician - who is still unavailable.

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  15. I am glad he's home, even if he is so much thinner, and glad that his sister has decided to stay and give you a little respite (I hope). I think perhaps he should continue to improve if there is any justice in the Universe! And I am so sorry to hear about your own worries. If it's not one thing it's another, isn't it? Sending you big cyber hugs, EC.

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  16. I never knew swans could be black! How cool!

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  17. Good to hear that your hubby is home. Now you and your SIL can fatten him up! Sorry to hear about your health issues. It is often true what your doc said about auto-immune diseases. I started with MS, add Lupus, add Transverse Myelitis.

    Great photos! Love the black swans.

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  18. I can donate pounds for the cause, can spare quite a few, to be applied directly to the skinny one. Would love to donate!

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  19. The human body is amazingly resilient. I have been checking here every day, hoping to find some good news, and here it is; progress at least. You and SP are having a hard, hard time. It's wonderful that you can still enjoy the beauty of the natural world and share it with your friends around the world. Thanks. xxx

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  20. I'm having a red wine for you too each night. :) Aw, glad you've got hubby home and that you're getting somewhere, all be it exceedingly grueling. Blaaah. Poor luvs.

    I first saw a black swan visiting (back home) England about five years ago. They are lovely! Great pics. Thank you.

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  21. Gotta say how inspired I am at your ability to see the good - the birds, a majestic landscape, the sunset - in the middle of life's chaos. You have a strength of character that makes me wish I could be a better person.

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  22. Yes, do everything you can to build up your reserves for what is still ahead. Healthy food, fresh air, lots of rest, daily walks. Fill up the tank now while you can, so you'll have enough when you must use it later.

    Easier said than done when you are waiting on SP, but do let other things go as much as possible or ask SIL for help. If you clean one a week or once a month, things are just as clean at the end of the month :)

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  23. the proverbial 'two steps forward, one step backward'... with hopes that the next surgery will be more successful.

    lovely photos - the black swans are quite exotic!

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  24. Good to hear SP is home and, it seems, all are stepping in the right direction. Yes, you need to be clear with the medicos... and, it sounds like you need to be even clearer with the dietician...

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  25. It makes me tired just reading about all that you are going through. I love that you maintain a sense of humor, probably what is getting you through all of this. You are pretty amazing, I hope you know that. I wish you well and hope that, in the end, you all make it back to normalcy.

    Andrea @ From The Sol

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  26. Sorry you are going through all of this...but very glad he is home and doing well.

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  27. WHOA! What a time you guys are having. Man. Wow. Woof. Yep, send sister home because, after all, it could be hours before the next emergency. And to top it all off, the damn tourists run off all the kangaroos, and the swans and gulls are intent on mayhem! Where is life nice?

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  28. I’m so very sorry to hear that you’ve been dealing with such tremendous stress and so many health issues (for yourself and your loved ones). Please know that you and yours are in my thoughts and prayers.

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  29. Blogger is having a hissy fit and refuses to let me reply to comments individually.

    DJan: Thank you so much.

    Birdie: The black swans are simply gorgeous. They have some white under the wings but the view most commonly seen is the rich black and the scarlet of their beaks.

    Karen: What a treat we have in store...

    Strayer: He can have my pounds first, but if you wait in line he may need some more. I doubt it though - I have more than enough to share.

    Anne: Thank you so much for looking in on us. I have been loathe to put up more post for fear of boring people witless. He is, however, continuing to improve.

    CarrieBoo: I love the thought of others joining in our wine o'clock. Thank you.

    Carmi Levy: The things around me have kept me sane(ish). Sadly I am not certain that strength of character is the right description. Stubborn?

    jenny_o: You are right. I am finally starting to do some much needed things for me. I went for a swim earlier this week, and will go again. I have been walking too...

    daisyfae: Fingers crossed here.

    Christine: Home AND improving. Wonders will never cease. And yes, I/we will be taking everyone's advice about the doctors.

    Andrea: My humour is black and has saved my bacon more times than I can count. And yes, it has been a tiring time.

    Riot Kitty: I hope you are continuing to improve as well.

    Snowbrush: It has indeed been a fun time. Not. His sister is going home next week after about six weeks with us. Who knows what fresh hell that will precipitate. There have been moments of glory though.

    Susan Bodendo - Super Earthling: Thank you for your good wishes. They all help.

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  30. Good gods what a time you're having with all this. You have an incredible attitude and you've kept your humor, so I know you'll be okay. I'm here in Vermont rooting for you! Dpn't forget to take care of you!!!! x

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  31. I'm so sorry for your struggle with MS. What a condition to have to face on top of everything else.

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  32. Austan: It has been a roller coaster ride that is for sure - and I never did like them. Black humour keeps me more or less upright.

    John Wiswell: If you have to get an incurable disease there are worse ones about than MS. Or the underactive thyroid I am learning to live with.

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  33. I do wonder about a hospital that could put him through all that and then be concerned that he'd lost weight!

    I wonder, too, how you can be coping so well with it all. To me your tone sounds (very) cautiously optimistic, which must be good. I hope I have that right and that you are proved justified in it. Every blessing to you both.

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  34. Oooo, E,
    I must get your address to send You & the Skinny One a card.

    ---thinking of you in Minnesota and sending lots of warm hugs.

    Xxx00

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  35. Good grief - I'm so sorry that all this is going on in your lives! What a desperate time for you. And having had a post surgical block in my gut I can attest to just how painful they are. You seem remarkable and I love your humour in the face of adversity - it's the only way.

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  36. I am glad that he is home at least. Baby steps. Am sorry that you are also suffering with you health more too. it must seem like such an uphill battle at the moment.
    On a slightly more positive note, I love the photo's of the swans. Such beautiful creatures. Even when they are harassing each other! Keep on keeping on xx

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  37. Blogger is still having its hissy fit and refusing to let me reply to you individually - and to comment on those of your posts with the reply option enabled.

    Dave King: Hospitals and medicos more generally are not on my list of favourites at the moment. I am cautiously optimistic, because I need a shred of hope to cling to.

    My Inner Chick: Thank you so much.

    Zig: Faced with a little black humour or drowning myself in a sea of tears, the choice is not hard to make. As you know.

    Jane @ Hesitant Housewife: Not having the daily hospital rounds is making life a great deal easier. And yes, the swans are a delight.

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  38. I've just caught up, and oh, so much has been going on for you!

    My best to the smaller portion -- and a deep scowl to your surgeon. Such arrogance. Don't know him and yet I'm not a fan of his attitude...

    Hug from Minneapolis,

    Pearl

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  39. Dear EC, well, being home always for me seems better than being in the hospital. I'm surrounded by familiarity and I don't have someone popping into the room wanting to take my vitals!

    But the road for you and the Smaller Portion is truly a long one it would seem, and there's another bend coming up--those operations.

    I do so hope that the surgeon you trust will be able to do those. Peace.

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  40. Pearl: Hugs for us and scowls for the surgeon(s) gratefully received.

    Dee: Thank you. Home is indeed best for the smaller portion and his cat (who missed him dreadfully). Not doing the trips up and back to the hospital is also a boon - though I do miss the hospital birds a litte.

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  41. "In a fortnight we have an appointment with the surgeon who performed the unsuccessful ileostomy reversal. I have a question or six I would like to ask. The following week we have an appointment with the surgeon who restored the ileostomy and who will be performing, if it is possible, future operations. I have a few questions about that too." - absolutely, get in there hon and don't hold back. I'm home again, but have thought of you over there, with all this going on, jingle your ears when you feel low and I'm still sending love to you too xx

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  42. Hope things get better for you! Always enjoy reading your posts:)

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  43. All Consuming: Thank you. I am jingling loudly - I hope things are OK with you.

    Crack your Whip: Today we had some brightness in our world...

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  44. it all sounds very painful, tiresome and horrible, when you totally deserve good things in your lifes - i know you do and since you have chosen small portion to be in your life i'm certain that he's a well-deserving person too - more good things should happen to good people!

    i am so glad you're able to have a fabulous garden and all these amazing animals around you to give you energy and light when things are rough. you can always count on nature and other beings to provide for the body and soul, when people don't...

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    1. Pia K: Thank you. It was a truly vile time - only brightened by the amazing birds which frequent the hospital. Just the same I would be more than happy to only visit the hospital to see the birds, and skip time on the wards all together.

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