Steadily recuperating

The district nurse is coming in daily, but hopefully the intravenous antibiotics will finish next week, which will make it easier to have a family Christmas in Hampshire.  He does sometimes overdo things, but uses that as guidance about how cautious he needs to be.  We are optimistic that everything is going well. He can be contacted on his home phone or the mobile, or go and visit!

Home and cosy

The home system is finally shaking down .  The district nurses come every morning to administer the intravenous antibiotic, all the pills are arranged in alphabetical order, and family have been filling in the gaps when it became clear that social services help would only be available once a week.  Private help is now organised every day, so that should help greatly as all the everyday tasks take a very long time, and going up and down stairs has to be planned to keep it to a minimum. The heating has been on practically full time in this freezing weather, so the house is warm, the bed is comfortable and the food is a pleasure not a chore.  So far so good!

In or out? Finally out!

First thing yesterday he was coming out in the morning, then not coming out until maybe Monday, then definitely coming out after all - so collection was in the middle of the rush hour, home just before 8.  At least it meant that he had supper before he left the hospital, so all he had to do was get used to being home and get into his own comfy bed.

He still has a Hickman line in, and to complete 4 weeks of intravenous antibiotics he will need a nurse to visit daily for another 11 days - unfortunately the convalescent home we had in mind cannot provide this service. He is also expecting someone daily, organised by social services.  We all hope he will take things as slowly as he needs to while he convalesces.

It is 17 weeks today since he first went to A&E in the ambulance

Peace and calm

What a different a few days of tranquillity can make! He looks much better, and yesterday started to feel more himself again.  Still of course much recuperation to be done.  He may well leave hospital early next week. Fingers crossed again!

Upgrade to first class

The hospital have found him a bed in the private wing (Room 2, Sainsbury Wing).  I think he will really enjoy a bit of peace and quiet, with his own bathroom and an entirely different menu.  Hopefully it will give him a chance to recuperate and get his appetite back. Visiting hours are from 10 till 10, which makes it much easier to plan getting to the hospital without getting caught up in the rush hour.

The cardiac surgeon won't be in the hospital until next week, so I am sure he will have a few days to convalesce before we work out a plan for making the transition from hospital to home.

Can we smuggle in a kettle?

The kettle is needed for two reasons: first of all of course the cup of tea: impossible to obtain anything other than 'hot(ish) and wet' on the ward. Secondly the hot water system isnt working as it should, so shaving is something of an issue. Actually we cant think of a clever solution to the tea issue, but a half-decent latte from the shop helps things along.

He is feeling pretty poorly. It is ironic that the recovery from the first heart operation was masked by being so ill from the effects of the endocarditis; this time I think perhaps expectations were a little unrealistic and we all thought results would be instant.  He is finding hospital food a bit of a struggle, perhaps because he has been round the menu many times and even the appeal of halal chicken nuggets is beginning to pall.  Imported ham sandwiches are going down well, though a Paxton & Whitfield's mini pork pie probably disappeared fastest.

Thank you to the kind security men at the hospital, who knew exactly who had my car when I stupidly (!) parked on a single yellow on a Saturday, and assumed that the sign saying 'Mon to Fri 8-5' meant what it said.  They helped me make the best of a bad job, and I will definitely be challenging Hammersmith and Fulham Council's ideas about fair parking.  Bad for me, worse for the poor father-to-be who was getting his wife to the maternity suite....

Thanks to you all for staying in touch in various ways: it is keeping us all going!

He can see!

I finally managed to locate a very helpful person on the John Humphrey ward, and she was able to find and deliver his two bags with all the vital contents.  Thank goodness: he now has his glasses, and can be contacted on his mobile again.

On the medical front he seems to be making good progress.  He will need intravenous antibiotics for at least three weeks, so he now has a new Hickman line.  Mr Punjabi, the surgeon, has warned him that he will be keeping a close eye on his recovery, so that is reassuring. Apparently it wasnt the repair that leaked but a separate hole in the valve, but no doubt we will learn more.

Luggage still in transit

He is recuperating well so far, and has moved to A9 ward, which is cardiac recovery, where it is now possible to visit.  It seems he will need a long course of antibiotics, but I have still to catch up on the details of the operation: the headline is that it worked!

Unfortunately the hospital has not yet managed to re-unite him with his belongings.  He left two bags on his bed in the John Humphrey ward, as instructed, before he went for surgery, and two days on no-one can track them down.  Currently he has no glasses, phone, dressing gown....So phone contact for the moment has to be via the ward.

Battered but brave again

I have just been looking back through the blog, and I find it hard to believe that we are back at square one.  However, this is actually a better square one;  there was quite a bit of incredulity last time when he was unable to get out of bed at a similar stage after a similar op, and I think the physio and some of the nursing staff just thought he was being difficult.  Now one can see what they are used to: in spite of all he has been through, and because of the intensive treatment of the systemic infection, he was already out of bed and in a chair when I arrived this morning.  This is clearly what the staff were expecting last time (though I dont think the senior medical people were) and what would be considered normal after this kind of surgery.

So that's all good.  He was stuck with any number of needles for drips and drains of various kinds, but I already thought he looked better (may be wishful thinking.....).  The operation took about 4 hours, and he was kept sedated until late yesterday evening when I was able to have a quick word with him on the telephone.  He was about to have lunch when I left today, after which he will move to the High Dependency Unit again, where he should be for a day or so.

Post operative

The op went ahead this morning as expected: it seems to have gone to plan and the mitral valve has been replaced.  I spoke to the nurse looking after him; he is still under sedation, and it may be that they won't rouse him until later tonight or tomorrow morning.  The nurse and I recognised each other from last time! She is on duty until 8 so I will speak to her again before then and post any further news.

Weekend waiting

I was able to replenish the stocks of reading material on Saturday, and we tried the hospital restaurant which didnt offer anything excitingly different from the food on the ward.  I also brought in a supply of vitamin supplements. He had two more blood transfusions on Saturday evening, which kept him pumping until 3 in the morning: hope he is getting an afternoon nap.  There were a few fireworks to be seen over Wormwood Scrubs, but no bonfires.

We await what tomorrow brings - certainly happy birthday wishes to Susan.

All prepped up but nowhere to go

He was pretty hungry (nil by mouth since midnight) by 2.30 when it was decided that there is no post-operative bed available, so the operation has been postponed until Monday.  He had chicken sandwiches for mid-afternoon breakfast.

TINA time

The surgeon came to see him on Monday, and it seems There Is No Alternative - so another operation is scheduled for Thursday.  There is a leak in the heart valve, and his GP compared the effect on his blood to a waterfall going over the rocks.  The damage to the blood is being contained by the blood transfusions, but a long term solution is required.

Exeat weekend

Many tests were done last week, and much new blood added to his system. I believe the antibiotics to set right the infection from the Hickman line have now been finished.  No definitive conclusions have yet been reached, and since no consultants are around much at the weekends it was suggested that he go home Saturday morning back Sunday; that meant an opportunity to get the train to the barber's, eat some home food and sleep in his own bed.  Simon is here from China, so also a chance to catch up with him over breakfast this morning (thank goodness for the extra hour).  The heart surgeon has been away for a week, so we await his view when he gets back.  It seems likely that the only source of the blood problem is the mended mitral valve, but obviously no one wants to do another operation until it is certain that is the right answer.  Vyvyan is admirably stoic.

So, back to the John Humphrey ward tonight.  Thank you everyone who has been in touch with Vyvyan and with me - it is very much appreciated.

Chances of surgery increasing

There has been much scratching of heads and more tests.  It has apparently become clear that the hemolysis is stemming from the heart valve and, since his blood is not stabilising, it is looking increasingly likely that further surgery will be required and this could happen next week.  No doctors around at the weekend, so it will probably be Monday before there is further clarification.

Home thoughts from afar

We know very little more. Is it that the doctors are still struggling with a diagnosis or that they are not sharing their thinking in a direct way? It seems as if haematology, infectious diseases and cardiac surgery are all potentially involved, so it is clearly a complex cross-disciplinary process.  It did appear that Vyvyan's blood had stabilised, but this proves not to be the case, and he has just had a second blood transfusion with another one to come to bring his blood count back up.  He is due to see the heart surgeon on Friday, and there is some concern about the valve repair.  Meanwhile he is in safe hands, with intravenous antibiotics as well as the transfusions, and we await further elucidation. No mention of returning home at the moment.  He can be contacted at the John Humphrey ward at the Hammersmith, and his mobile is by his side.

Ground Hog Day

He saw his GP on Tuesday, but by the afternoon the hospital had asked him to come back in to the Hammersmith, particularly because there was concern about the Hickman line which has now been in for many weeks.  He spent Tuesday night in a 'doing tests and thinking about it' ward, but it did not become clear until Wednesday that it had become necessary to change one of the antibiotics, and, since it can only be administered intravenously, it would mean being in hospital for at least five days.  He has had a number of investigations, including x-ray and ECG, and they woke him up last night to have the Hickman line surgically removed some time in the small hours!  By teatime today they were ready for him to be moved to a ward, and - you couldn't write the script - he is back in EXACTLY the same bed with the view of the train tracks in John Humphrey ward, which is supervised by the infectious diseases team.

Again it is not entirely clear how the thinking is progressing, but it seems that the Hickman line was causing some infection so now better out than in.  The anitbiotic requires a hospital stay so we expect him to be an in-patient until at least Monday.  We await the view of the cardiac team, but there is obviously some concern about the heart repair and whether this is the cause of the hemolysis, which is leading to aneamia, hence the blood transfusions.  We look forward to more news tomorrow.

On the good news front, at least the hospital menu has changed from spring/summer to autumn/winter.  Sounds more like a catwalk collection.

Being an out-patient requires patience

Last Thursday involved two appointments at the Hammersmith, neither of which went according to plan.  By the end of the day he had been to the hospital twice, spent a small fortune on black cabs and no one ever did find his notes.  He was back early the next morning for another two blood transfusions.  However, inspite of the general air of chaos all the important medical procedures seem to have been done, so a good outcome.  Being at home seems to be a tonic in itself.

Hurray, it really is home at last!

Tuesday came, and it finally seemed as if he really was going to be discharged;  as it got later and later it began to look as if he might have to spend another night, but I finally picked him up at 9.00 last night!! So we all had a very jolly glass of champagne once he got home, and we were on call overnight but not required.  We stocked up the larder and fridge this morning before we had roast chicken and a glass of port for lunch, and fortunately his friend is blowing through from York tonight, so he will have company.  We had thought he would have a spell in a convalescent home, but, since he has to have further appointments at the Hammersmith hospital, going off for a bit of recuperation by the seaside isnt practical. He is still not completely well, but clearly being home is a tonic in itself.  His GP is helping to make the transition between hospital and home, and lets hope that his progress continues.  Home visits very welcome!

Whither next?

I have been about to write a post all week, and then there is another change so I think I will just wait to see the outcome.  However, clearly nothing is going to be resolved immediately.  First of all he is currently still at the Charing Cross hospital having undergone a number of further scans and blood transfusions. There is something wrong with his blood, which we understand is hemolysis.   This seems to be red blood corpuscles dying faster than they are being replaced, though I am still unclear about the cause or the treatment.  The urology team are conferring with/handing over to the haematology team. Yesterday it seemed that he would be returning to the Hammersmith hospital; today they were talking about discharging him.  We have learnt not to get too excited about a discharge and how his care would continue outside the hospital, and he has been told nothing will happen at speed, but there is no doubt it is all very unsettling for him.

Week 9 has come and gone; week 10 begins.  Please stay in touch - it helps enormously.

Eight weeks and bored

The issue of blood in his urine still seems to be puzzling the medics and it seems he will be staying put until they have made a diagnosis.  The MRI was completed yesterday and the picture does seem to be becoming clearer.  Meanwhile he would welcome contact from the outside world!

Marjorie Warren ward

He is now settled into Marjorie Warren Ward at the Charing Cross hospital, with slightly different rules which means he has to provide his own soap....but he does have a hanging cupboard, so perhaps that compensates.  Anyway he is currently under the care of the urology department but it seems to be taking some time to understand what the blood in the urine signifies.  He had half an MRI scan two days ago, which could not be completed because his foot went into its irritating habit of spasm and wouldnt stay sufficiently still.  Nobody warned him they were going to have another go yesterday morning, so he was in the shower.  Hopefully a still body can be combined with the machine today.  There is still talk of an imminent discharge, but he had two blood transfusions yesterday so there is obviously still concern about keeping his blood count stable.  We continue to hope to know more tomorrow.

Change of scene

He was moved last night from the Hammersmith (by Wormwood Scrubs) to the Charing Cross (in Hammersmith) and has swopped his view of the trains for a view of the cemetery from the seventh floor. This is an assessment ward (N7) so is probably temporary, and he is under the care of the urology consultant.  I will update when I know more.

A setback

The urology appointment has been successfully accomplished and has revealed blood in the right ureter (if I have understood correctly).  This is going to mean another appointment with the urologist, with possible further investigation under anaesthetic, in five days time.  It's back to his friends at John Humphrey Ward at the Hammersmith hospital for the moment.

Another specialist

Managed a good talk with the registrar, which improved my understanding greatly. The appointment scheduled with the urologist has been brought forward as the blood in his urine is causing some concern, hence the transfusions to keep his blood count up.  Belt and braces meant that the registrar asked the nursing staff to arrange for him to be transported to the Charing Cross an hour early for the appointment; the nursing staff then added on an hour, with the result that the pick up was scheduled for 8.00 for an 11.00 appointment! Vyvyan's main concern was where he would get his breakfast.

In other ways he has made good progress, moving around very much more easily.  The pain in his back is probably an inflamed disc, which should mend on its own, albeit slowly.  The antibiotics can now be administered orally rather than intravenously, although removing the Hickman line has been postponed while there is still a need for blood transfusions.

He was delighted with the Private Eye which reached him safely this morning (Peter, was that you?)

Talk of discharge - six weeks (and a day) later

He is looking altogether much better, and a few good nights sleep might make all the difference, as he is still often disturbed by various aches and pains.  There is now talk of discharge next week, although no decision will be made before Tuesday at the earliest.  A decision must also be made about whether he needs to spend some time convalescing before going home, and how much this will be supported by the community health/social services system.  We are quite new to all this, so are working out how best to approach it all.  Considering how ill he was six weeks ago this is all really good progress.

Meanwhile we are trying to track down quite a lot of his post which has gone missing somewhere in the hospital - it seems not all of your communications have got through to him. At this moment he is absorbing another blood transfusion....

Harcuts in hospital

Vyvyan has done a reverse commute to Lower Ashtead to get his hair cut for years.  When he rang the barber to ask how much a visit to the hospital would cost, the response was that for such a regular customer there would be no extra charge....so on Sunday morning he came up to London with his lovely sharp scissors and did a wonderful job - so wonderful that one of the staff told Vyvyan he looked Sweet Sixteen (we assume this is a compliment) A cousin took in the mad selection of paperbacks that I had grabbed from the pile; at least they will provide some entertainment, not least in wondering why that particular choice was made....

Blogging from France

Much of Vyvyan's day seems to be spent absorbing stuff intravenously - yesterday's contributions included more blood and the antibiotics.  Fortunately one of his friends was there to be talked to and thus while away the time.  We are looking slightly impatiently down the road seeking  the corner to be turned....but his footsteps still lead in the right direction and clearly patience is what is required.  He is being looked after with exemplary care and has plenty of inner resources. Onward and upward!

Rehabilitation is a long process

Time to think of ways to entertain the patient....magazines are no longer enough, so a steady stream of reading material is required.  Next step is to see if we can get the computer organised.  He is now contactable on his mobile or via the desk at John Humphrey ward, who can give you the number for the landline by his bed.  One of his friends spent yesterday afternoon with him, and together they admired the view on the horizon, probably of Hampstead, and the corner of the exercise yard at Wormwood Scrubs prison closer by.

On the medical front he has been to the Charing Cross Hospital to have his eyes examined (very thoroughly apparently) - this is five minutes down the road but takes half a day, and results in a very tired patient! The ambulance arrived back at the Hammersmith and the driver left Vyvyan in the back while he went to get a wheelchair.....slight drama because he forgot to put the handbrake on so it was a bit exciting until someone leapt to the rescue.  Vyvyan has also had two blood transfusions (was it his neice's?.....GIVE BLOOD  all of you who can!) and is still having three doses of antibiotic a day, so is currently spending much time attached to a drip (the blood takes ages).  He can walk competently around the ward and deal with his own personal care now, but still dependent on the walking frame.  Still in considerable pain from his back, and an MRI to be done to check on progress.

Slow but steady progress

He is able to do more all the time.  Yesterday it was a couple of steps from chair to walker with no support, today some stairs.  Tomorrow he is going to the Charing Cross to have his eyes looked at, and an MRI is again in prospect to check progress.  Next step is to experiment with less pain medication, though antibiotics intravenously three times a day continues.  We are away 1-9 September, so all visiting would be very welcome.

He doesnt seem to have made friends with the heating engineer or similar yet, but no doubt that will come. He now has the rail maps and is checking that the line is being run properly.  He is being very well looked after, and there is some talk of a home date but all is speculation at this stage.

John Humphrey ward

It seems as if one of the consultants must find the whole case interesting, as it has been decided (in consultation with the patient) to keep him at the Hammersmith: he has now been moved to John Humphrey (wonder who he was) ward, which is for rehabilitation.  He is in a bay of 3 (with bathroom), and has the bed by the window, which even means he can see the trains (could be the main line out of Paddington, but he doesnt think they are the right sort).  He is annoyed that I consistently forget to bring him a street atlas, which is inhibiting him from working out exactly which trains are going past - like so many of the big hospitals what was a Victorian building (in this case next to Wormwood Scrubs prison) has been enormously expanded, and it really is quite difficult to work out which way you are facing (especially with August clouds so that the sun is not as much help as it might be).

He is persuaded that his mobile phone is a good idea, so is now in contact with the outside world.  He is still having intravenous antibiotics three times daily  Still some issues with sight and hearing, neither of which are quite back to normal yet, and obviously some infection in other parts of the system, but is noticeably improving every day.  He is starting to rip through the reading material (magazines so far) so may need further supplies soon!  Two of his friends e-mailed today and both made the assumption that he will have made friends with the resident engineer by now: I am sure the only reason it hasnt happened is that the cant walk that far yet!

Action for visitors

He has now decided he needs as much exercise as possible, so intends to enlist his visitors to escort him on his trips round the ward. He can talk and walk at the same time!

Three weeks today

Friday already! Its astonishing how much Vyvyan has been mended in the last three weeks, but still clear there is some way to go, with the main difficulty the pain in his spine. He is now in and out of bed with the aid of a walking frame but still in very considerable discomfort.  A neuro physio visits most days though they don't always see eye to eye.... He is still taking a selection of pain killers whilst the intravenous antibiotics (3 different ones apparently) continue.  Havent achieved a chat with a doctor all week so still in the dark about how they see progess from here - there is a limit to what information Vyvyan can relay while the drugs and the minutae of hospital life intervene. He is still in Ward A9 at the Hammersmith and no news of a move. Visitors would be welcome but I suggest you ring me or the hospital and just check that he hasn't moved before you go. Visiting is from 3 p.m.

Mattress brands

He has an astonishing mattress, which can be raised at the head and the foot and under the knees....and it is pumped with air so that it is always moving slightly to prevent pressure in any one spot.  Of course we have had to look up the manufacturer. No news of any move, but the specialist physio is helping daily.

Rehabilitation looms

He is still very uncomfortable with a lot of back pain which makes moving from bed to chair and further afield (we are not talking football pitches here) very slow and painful.  It seems likely that he may change hospitals, maybe as early as tomorrow, for rehabilitation with the help of physio etc.  Watch this space.

Graduated to a chair!

A big step forward (yes that was a joke) as he did a soft shoe shuffle to the bathroom today with the help of a frame and a capable physio.  Sitting up in a chair looking a bit tired and battered and obviously still in some discomfort/pain, but a great improvement!  He has the Economist and Private Eye, and starting to feel he can concentrate a bit.  Lovely cards which he has very much enjoyed - thank you all.

Bed #6

Tanya visiting tonight: took some time to find the patient who had moved again and is now in ward A9 which is a promotion to a regular ward. The prize is he now has his own bedside cupboard.  Downside was the man opposite with a very busy mobile phone, so glad to hear him telling a caller that he is going home tomorrow!

Cards and contact

Vyvyan has been moved four times so far, and as far as I am aware no cards have reached him.  I know some have been sent direct to the hospital so I will try and track them down.  Might be safer to send them to me and I will take them in.

More of the same

In pretty good spirits today after having a Hickman line put in so that antibiotics can be delivered intravenously over a protracted period.  He was thinking he might get around to reading The Economist from a few days ago, but it had got tidied away....must be the longest spell he has spent without reading since he first learnt how! Cardiology are looking after his recovery from the valve repair, and neurology are monitoring the cyst on his spine which is a legacy of the infection.  He had lunch in a chair, which wasnt very comfortable but made a change from bed. 

Slow Sunday on the ward

Ho hum not very exciting.  We had a nice chat tho. Large posses of doctors expected tomorrow.

NHS sheets

Now he needs a tape measure so that he can check up on the size of the mattress....clearly assessing the linen.  Its not fun but there are fewer tubes attached tho still plenty of antibiotics.  He is starting to work on getting mobility back tho quite why that involved a bed bath at 5 a.m. is not entirely clear.  He was very pleased to hear all the good wishes from the Newcomen Society.

Move to High Dependency Unit

I spoke to the nurse looking after him this morning,and he was doing well. I couldnt get through to the ward this afternoon or evening, so no further reports. During the course of the day he should have seen the neurological team and have been moved from the Cardiac Recovery Unit to the High Dependency Unit.

Post operative

He looks less as if he has been in a car crash today, though still wired up to all sorts of machinery.  He now has to recover his strength, which he set about doing by consuming his supper with determination.  He told me about the rare book he has out from the London Library, so I know he is feeling more himself.

The neurological team are now expected tomorrow to confer about the infection on his spine.  It still seems as if a protracted course of antibiotics will be required.

News from the outside world is clearly very encouraging, so thank you all for your kind thoughts.  Do keep in touch with him! I am sure he will be strong enough for visiting soon.

Surgery completed

The operation is successfully completed and was a valve repair rather than a valve replacement so that sounds good news.  He looks battered but brave! We had a very happy chat and gave him all the kind messages that everyone has sent. He was of course very tired so we didnt stay long. Next treatment is plenty of intravenous antibiotics.  The neurologists will see him tomorrow and so will we.

Surgery timetable

We expect the operation to be 8.00 on Wednesday morning (tomorrow).  He will then be in the ICU for a couple of days.  I will post news as soon as we have it.

Making contact

Follow the link for the address of the Hammersmith hospital 
I can't advise which ward because he will be moving after the surgery.

His cousin rang from Canada and managed to speak to him, but she is the only person who has managed to achieve this!

Anything sent to his home address or to Abbots Worthy will reach him via the visitor link.  And of course we will make sure he sees comments on this blog.

Start of a drama

John Vyvan Vickers has a spell in hospital

Vyvyan hasn't been feeling well, and went to his GP who diagnosed flu.  We were concerned; I went round on Friday and found him collapsed on the floor at home, conscious but confused.  The ambulance crew arrived (4 of them!) and we went with all guns blazing to the Hammersmith Hospital.

They efficiently tested everything, and it was clear he had a massive infection.  He was admitted and put on intravenous antibiotics and a saline drip.

On Saturday the concern was that it could be meningitis, but they couldn't complete a lumbar puncture.

On Sunday the cardiologist made the diagnosis of endocarditis.  This is basically an infection of a heart valve.  He also had an MRI at the Charing Cross; because he had back and neck pain and they wanted to check whether bits of the infection had floated off and lodged elsewhere.

On Monday it was decided that they need to operate to replace the mitral valve in his heart because the infection is being spread to other parts of his body.

Today is Tuesday.  Roger was the visitor today as Rolls and I were elsewhere.  Their preparations for the surgery tomorrow morning (0800 we think) included an angiogram.