What a week it has been.
The smaller portion was operated on last Friday to restore an ileostomy. Not the outcome either of us wanted, but necessary. In the following days his surgeon gained the nickname of the 'invisible surgeon'. He apparently made no visits to the hospital over the weekend, leaving it to the hospital registrar or to the intern. Their visits all took place at a time when the smaller portion was either non compos mentis, asleep or in the shower. We know that if either a bagless state or a return to the more manageable colostomy are possible at least one more and more likely two more operations will be necessary. We wanted to discuss what had been done, and what the smaller portion's could expect in his future. It seems these are unreasonable requirements.
Finally on Monday the smaller portion was allowed clear fluids. Which he promptly vomited. So they moved him back to nil by mouth. He was rushed off to x-ray and there was talk that he had a new blockage - in the small bowel to match the untreated one in his large bowel. There were murmurs of leaving it to settle by itself. There were also talks of further surgery. His sister and I were less than happy and tried (very hard) to make an appointment to see his surgeon.
'The doctors do their rounds between six and eight in the morning. You would not be welcome.'
'You could come in around nine and ask to have the registrar paged. Lots of doctors (including by inference the one we wanted) are on holidays. It is school holidays you know.'
So we came in the next morning, arriving at about quarter to nine. The registrar was paged. And paged again, and again, and again. Finally the intern arrived to say that if we waited he knew we were here.
The registrar arrived (over three hours after he was first paged). He really didn't want to talk to us. Tough. He pooh-poohed the idea that the smaller portion had another blockage, while leaving it open as a remote possibility. He professed himself very happy with progress, but refused to discuss any long term prospects. 'They are matters which should be discussed with the surgeon at the follow-up consultation.' He agreed (when pushed) that it may benefit the smaller portion to hear that he didn't have another blockage. When it became obvious that we were not going anywhere he proceeded to do just that, adding that the smaller portion could have fluids again.
Which the smaller portion lost fairly dramatically during visiting hours that night. I gather that many visitors to the ward (we were not there) were adversely affected. How sad, never mind. Back to ice and intravenous anti-nausea medication. We also found out - after the event naturally, that the smaller portion has been on the emergency surgery list for the twenty-four hours which included our discussion with the registrar. Hiss and spit.
The next night? The same as the first, just a little bit louder and a whole lot worse.
Somewhere in the middle of the week we, as opposed to he, had a very bad day. I made myself a cup of tea. I put the teabag in my cup, added the water and then the milk. I took a sip. I took another sip. It was cold. I hadn't turned the jug on. I finished it. Later that day his sister wanted a cup of soup. She tipped the packet into her bowl. She added water. She stirred it, she tasted it, you guessed it. She drank it. We think it was on the same day that I shut her in the garage. Like a good passenger I hopped out of the car and opened up the garage. She drove in. I shut the garage. 'Haven't you forgotten something?'. 'No, what?' 'Me.' Oops.
Today we have had a turn around. The doctors have been round and have promoted him to eating food again. And he had porridge (which he dislikes) for breakfast and an egg and lettuce sandwich (which he hates) for lunch. When last we saw him he had retained both of them. We have however told him that if the hospital makes going home noises tomorrow he is to tell them that he doesn't have enough money for a taxi home, has no house keys and has no-one to pick him up. I hope he heard that.
There have, as usual, been some wonderful sights to brighten our days.
Early morning glory.
Birdy joy at the hospital.
More birdy joy.
And the delights of a gentle rain and low cloud down the valley this afternoon.
Thank you all for your support and good wishes. They have meant a lot. In the coming days I hope to be able to come back and pay some long overdue visits to your blogs.
The smaller portion was operated on last Friday to restore an ileostomy. Not the outcome either of us wanted, but necessary. In the following days his surgeon gained the nickname of the 'invisible surgeon'. He apparently made no visits to the hospital over the weekend, leaving it to the hospital registrar or to the intern. Their visits all took place at a time when the smaller portion was either non compos mentis, asleep or in the shower. We know that if either a bagless state or a return to the more manageable colostomy are possible at least one more and more likely two more operations will be necessary. We wanted to discuss what had been done, and what the smaller portion's could expect in his future. It seems these are unreasonable requirements.
Finally on Monday the smaller portion was allowed clear fluids. Which he promptly vomited. So they moved him back to nil by mouth. He was rushed off to x-ray and there was talk that he had a new blockage - in the small bowel to match the untreated one in his large bowel. There were murmurs of leaving it to settle by itself. There were also talks of further surgery. His sister and I were less than happy and tried (very hard) to make an appointment to see his surgeon.
'The doctors do their rounds between six and eight in the morning. You would not be welcome.'
'You could come in around nine and ask to have the registrar paged. Lots of doctors (including by inference the one we wanted) are on holidays. It is school holidays you know.'
So we came in the next morning, arriving at about quarter to nine. The registrar was paged. And paged again, and again, and again. Finally the intern arrived to say that if we waited he knew we were here.
The registrar arrived (over three hours after he was first paged). He really didn't want to talk to us. Tough. He pooh-poohed the idea that the smaller portion had another blockage, while leaving it open as a remote possibility. He professed himself very happy with progress, but refused to discuss any long term prospects. 'They are matters which should be discussed with the surgeon at the follow-up consultation.' He agreed (when pushed) that it may benefit the smaller portion to hear that he didn't have another blockage. When it became obvious that we were not going anywhere he proceeded to do just that, adding that the smaller portion could have fluids again.
Which the smaller portion lost fairly dramatically during visiting hours that night. I gather that many visitors to the ward (we were not there) were adversely affected. How sad, never mind. Back to ice and intravenous anti-nausea medication. We also found out - after the event naturally, that the smaller portion has been on the emergency surgery list for the twenty-four hours which included our discussion with the registrar. Hiss and spit.
The next night? The same as the first, just a little bit louder and a whole lot worse.
Somewhere in the middle of the week we, as opposed to he, had a very bad day. I made myself a cup of tea. I put the teabag in my cup, added the water and then the milk. I took a sip. I took another sip. It was cold. I hadn't turned the jug on. I finished it. Later that day his sister wanted a cup of soup. She tipped the packet into her bowl. She added water. She stirred it, she tasted it, you guessed it. She drank it. We think it was on the same day that I shut her in the garage. Like a good passenger I hopped out of the car and opened up the garage. She drove in. I shut the garage. 'Haven't you forgotten something?'. 'No, what?' 'Me.' Oops.
Today we have had a turn around. The doctors have been round and have promoted him to eating food again. And he had porridge (which he dislikes) for breakfast and an egg and lettuce sandwich (which he hates) for lunch. When last we saw him he had retained both of them. We have however told him that if the hospital makes going home noises tomorrow he is to tell them that he doesn't have enough money for a taxi home, has no house keys and has no-one to pick him up. I hope he heard that.
There have, as usual, been some wonderful sights to brighten our days.
Early morning glory.
Birdy joy at the hospital.
More birdy joy.
And the delights of a gentle rain and low cloud down the valley this afternoon.
Thank you all for your support and good wishes. They have meant a lot. In the coming days I hope to be able to come back and pay some long overdue visits to your blogs.
How terribly frustrating! When Dad was in the hospital, and i absolutely had to speak with a doctor, i'd try to be in his room by 0600. Of course, that would be the morning the doc did rounds at either 0530, or 1000. Here's hoping there is continued progress and better days ahead for all of you!
ReplyDeletedaisyfae: The ward that the smaller portion is in opens its doors to those without hospital access at ten. Getting in earlier than that is a real challenge.
DeleteIt is the same all over. The doctor is never around when you are, there is little information given to you by the staff, and the stress of it all takes its toll.
ReplyDeleteStarting Over, Accepting Changes - Maybe: How sad that the things that are universal are the negatives. And you are right about the stress - there has been a fair amount of hysterical laughter here.
DeleteThe arrogance of some specialists are beyond belief, aren't they? It seems like their view of themselves as being Masters of the Universe completely robs them of bedside manner or empathy of any kind.
ReplyDeleteI think that all such specialists such undergo their own types of surgery to remind them of what it feels like to be at the other end of the chain.
Hugs to you all.
Kath Lockett: You are so right. Not only should they undergo their own type of surgery they should also undergo a failed example with complications.
DeleteSeriously I think I would have hit someone by now, I admire your patience. Hope SP continues to mend, to keep is fluid and food down, but moving out if you get my drift. No more cold cups of tea for you either. Chuckling at that and the garage story. So glad you can keep seeing the brighter side of the day. Healing light, positive vibes and a great big HUG from Perth xxx
ReplyDeleteKakka: Not patient. Exhausted, brain dead and stubborn. Thank you for the healing vibes and the hug.
DeleteI ran into some of that hospital BS when I was there (separately) with my mom and dad. There was one weekend with dad that he was kind of out of it and we didn't see any doctors at all, despite my calling around. So I quite feel for you. I hope things start progressing in a good way. (((hug)))
ReplyDeleteLynn: Fingers crossed that the upward trend continues.
DeleteI am relieved that SP was able to keep something down at last. Hopefully the blockage has indeed worked itself out. This are such trying days. I am so glad he has you as an advocate. You are going to see this through, as hard as it is. I'm so hoping we will all see this behind us.... you are in my thoughts and prayers, EC.
ReplyDeleteDJan: I have invested a lot of time and energy into the smaller portion over a period of over thirty years. I am NOT going to allow the hospital to faff it away.
DeleteOh gee, what a terrible ordeal for you all. You are a patient woman, I would have been screaming, which would not have helped the situation at all.
ReplyDeleteKaren: I did say to his sister and my family that the pyscho bitch from hell was clamouring to be let loose. She just snarled at hospital staff rather than going for the throat. The snarl worked though.
DeleteGood God, where do they find these people? He is lucky to have you both advocating for him, that will make all of the difference.
ReplyDeleteRiot Kitty: I think they breed them in medical school. I would have loved your machine gun this last week. Probably a good thing I didn't have one.
DeleteWOW! What a ride! Those drs. are a joke. I don't think my temper would have done well with this! I would have been screaming. Poor SP and you. I had to laugh when you wrote about locking your Sil in the garage! lol. Thoughts and prayers!
ReplyDeleteTeresa: Not a fun ride. I hope we are coasting to the exit gate now.
DeleteThe photos are beautiful and your counter marching orders(no money, no keys, no ride) are brilliant. How said it comes to that. Continuing best wishes.
ReplyDeleteJoanne: The birds kept his sister and me sane(ish) this last week.
DeleteI guess it's the same everywhere. Trying to catch Drs on rounds is a trick and requires real perseverance, which you and sister certainly have. It is good news that he can take solid food again. I am thinking of you here on the other side of the world. The bird pics and videos are a treat!
ReplyDeleteAnne: Thank you. I think it came down to the idea that we could wait for news in the hospital - where we might just find something out, or we could stress out at home. Not good. I am glad that the bird pictures and videos were a treat for you.
DeleteDear EC, after reading this post brimming with sympathetic disgust and rage, I am so relieved that the end of it showed some signs of imminent improvement. It's true, about this sort of rotten care, the stories are sadly universal. I can't wait until you give us news that SP is out of that place and home on the mend. Until then, perhaps you can get some of those lovely birds outside the hospital to take over his care? They are far more regular in their hours of attendance, and probably a lot more intelligent! Sending you another healthy dose of love.
ReplyDeleteTwo Tigers: I am grateful for the healthy dose of love. The birds are MUCH more attractive and, as you say, probably more intelligent than the hospital staff.
DeleteA doctor with empathy and kindness is a rare and beautiful thing. Instead, so many are as you describe. Would it kill them to provide a little communication to the family? Really.
ReplyDeleteIt's good to hear that SP is at least starting to get over this hump. He needs to build up his strength for the future. And so do you.
jenny_o: Small slow steps for him. Fingers crossed that I will also be able to take those steps. I am very, very tired right now.
DeleteDear EC: it's good to hear some progress is (finally) being made. I don't know quite how you've managed to keep your sanity - the psycho bitch from hell must have been under the streongest possible lock-down. I am in awe of your ability to keep going.
ReplyDeleteAll the best - the birds are quite stunning, and that birch at the top, superb.
Arohanui.
Alexia: Thank you. The birds kept me sane(ish).
DeleteCongratulations on the fella being able to eat actual food again. After all the rigors in this post, and his issues with non-food in earlier posts, I can imagine there's at least a little relief to it.
ReplyDeleteJohn Wiswell: It is wonderful that he is able to eat again. It is even more wonderful that he is hungry.
DeleteAnother blockage?? and how would it resolve itself? Just curious, as I suppose some blockages do move themselves.
ReplyDeleteI'm glad to hear his eating is improving, but I really hope they keep him in hospital until things are really looking much better, until the surgery heals much more for instance.
River: It was never really explained to us but I gather that some blockages do clear themselves given fluids and time. The question here seems to be did he have a blockage and if so has it cleared itself. We have no real answers and the medicos don't seem to be able to agree among themselves. Sigh.
DeleteI hope this long path of misery resolves itself for the better very soon. Best thoughts and wishes sent your way!
ReplyDeleteRon Dudley: Thank you. We seem to be stuck on the one step forward, two steps back routine at the moment but at least there are some steps forward.
DeleteOne step forward, several back, then another forward. Focus on the forward--SP is making progress.
ReplyDeleteWhat quite bothers me is the total lack of compassion this hospital and its providers have for him, for you. I wish I could say it is an anomaly, but it isn't. My father, in the hospital for 7 days after suffering his own blockages (requiring a stomach tube in the end) NEVER received a bath. Not a sponge bath, not a shoer--nothing. And this in one of the "best" comprehensive cancer centers in the country (I'll name it--University of North carolina at Chapel Hill). Do not go there, anyone--the care puts the nursing and medical professions to shame (and I am an alumnus twice over).
Hugs as always. Hope your next cuppa soothes. Peace...
Linda: It does indeed seem to be a world wide issue with hospitals. Compassion? No time. Empathy? Can't even spell it. Hiss and spit.
DeleteO I just want to fast forward all of this for you both, as I'm sure you do too.
ReplyDeleteI hate it when Drs will not explain . . . and dentists! We may not have spent all those years studying, but that does not make us stupid. I think they cant bear to say "we don't know" either.
Such good news though that SP has kept some food down. Loving the photos, especially the top one (again!) and so happy, happy to see you back, hugs to both of you x x
bugerlugs63: Fast forwarding seems a wonderful solution to all this mess.
DeleteDamn the stupid specialists, I despair sometimes at the treatment of patients and it's happening the world over by the looks of it. Here's hoping he keeps food down, and things buck up for you both soon. Hugs and best wishes, Michelle xxx
ReplyDeleteAll Consuming: For some reason he appears to be able to keep food down during the day (with the help of some anti-nausea medication, but loses it at night. I am hoping so much that last night was different.
DeleteBloody hell! What a bunch of blasted rat-fink-ish docs... URK URK and double URK.
ReplyDeleteAnd another growl...
I am SO GLAD that he has at least had a bit of something to eat...
Fingers crossed everything goes better from now on. And I say you tell these docs exactly what you think of them. They need to get off their high horse and listen to the people they are working with!!! Best wishes from across the pond...
Nicky: I know that your good wishes are travelling across the miles to us. Thank you.
DeleteOh gosh ... how very very frustrating and heart-breaking.
ReplyDeleteSo glad that things seem to have taken a turn for the better.
Hugs.
ladyfi: We are still playing the one step forward, two steps back tango. Something has to go right soon.
DeleteThey are arrogant, those doctors.. it must be a defence against something or other - perhaps the extreme anxiety that you are expressing but which they cannot know about lest they not be be able to function. That moment when you realised that SP had been on the emergency list all along. Perhaps the truth is that the doctors don't know either...which is terrible for them, and everyone else. Hopefully they did not call a social worker to organise a taxi voucher and/or emergency accommodation when they realised that he was holding out...
ReplyDeleteThis is one terrible adventure...
Christine: Beyond arrogant some of them. We now have no idea when he will be discharged. And, since he is still vomiting despite anti-nausea medication, I am not at all sure that home is the best place for him. He has lost over 15 kilos now, and continues to lose weight every day. Frightening. For him, for us all. The last suggested discharge date was tomorrow. He didn't see any of the medical fraternity today and continued to vomit. Who knows what the morrow will bring...
DeleteYou are strong to endure all this and so is he. What caused all these problems with his bowels in the first place, do you know?
ReplyDeleteStrayer: I don't think we have a lot of choice but to endure it. The problems seem to start with the diverticulitis we didn't know he had until his bowel erupted. From there we have been lurching from medical procedure to medical crisis to medical procedure and back again.
DeleteThis sure has been a long struggle. Dr. are so unaware or not caring that the families are hanging on each word.
ReplyDeleteYou are amazing. In the midst of it all with the little one, you take your camera and surprise us all with your bird paradise.
Susan Kane: The birds are the early morning sky are essential for my sanity. What is left of it.
DeleteDear EC, I haven't been visiting blogs for almost a week and so I missed this update on SP and the invisible doctors. I do so hope that by now--Tuesday, five days after you posted--things are better. This has been such a long wearisome time for SP and his sister and you. And always there's the fear of more operations.
ReplyDeleteI was glad to see your photographs and videos because they tell me that you are taking time to simply enjoy the world beyond those hospital walls. Be good to yourself. Peace.
Dee: Thank you. These photos and videos were taken from within the hospital grounds and were a lovely and daily reminder of the beauty that this world can offer.
DeleteThis week sounds like hell. I'm hoping it's much better now. The early morning and birds are beautiful and I see why you find them so comforting. Bless you heart. May you soon have peace and some sort of normalcy in your life.
ReplyDeletebarbfroman: Thank you. Normalacy sounds lovely. Bring it on. Please.
DeleteOh what a time you've had. Do hope all is progressing in the right direction, that you've finally gotten to chat to someone who knows what the heck is going on. Please know I'm thinking of you all and sending a big hug.
ReplyDeleteDenise: Small steps continue - mostly in the right direction.
DeleteI'm so sorry, I'm hopeless with keeping up with blogs, unless I see them on facebook, I know, terrible excuse. :( What a rough time you have been going through. I hate hospitals and Drs, and all the nonsense that goes along with them. Being a diabetic for so long, I have experienced the best and the worst of the medical system. I am glad that things seem to be improving, I hope it continues. xx
ReplyDeleteOh, I seemed to have replied from my old blog profile too... Anyways, you know who I am!
DeleteJane @Hesitant Housewife: Thank you. Slow steps still, but mostly pointing in the right direction.
DeleteDear Sweet E,
ReplyDeleteIn the midst of your struggles, you capture BEAUTY.
I CANNOT believe those birds. If I saw one in the wild in Minnesota, I'd perform a FLIP!!
The White Birds thrill me!
So Much Love Flowing ... Xxx
I love that you dropped by the blog. You're always, always welcome. And the only way you could corrupt a poll is by sending me chocolate. So feel free to do so.
ReplyDeleteBy the way...it seems so strange and somehow so right in the world that you're looking at the flowers of spring as we round the corner and head into sleep of fall. Everything is turning as it should.
lutheranladiescircle: Chocolate is a wonderful bribe is it not? Some of the best things in life are chocolate.
Delete