Saturday, 28 November 2009

HOME SWEET HOME

We came home yesterday, a bit shell shocked, but glad to be in familiar surroundings again. Now I have "more time" (that's a laugh) I can contemplate on the happenings of the last few days.

When we arrived at the hospital I asked if a porter could help OG out of the car. Instead they sent two nurses. The nurse who turned out to be our angel asked OG to stand up and started to get hold of his arms. I panicked that he would fall and yelled at her that he couldn't stand, she yelled back that she had been nursing for 35 years, was not allowed to lift patients and knew what she was doing. As it happened she did get him to stand and transfer himself to the wheelchair, but there was immediately "bad blood" between us.

He was helped into bed and his blood pressure and temperature was monitored at regular intervals. His blood pressure was quite low but nothing particularly to worry about. However, the student nurse that was taking his temperature told us the they had run out of the sheaths for the electronic thermometer and she was trying to take his temperature using small plastic strips. She said everyone hated using them and she couldn't get a reading. The same thing happened when she tried again later, but she thought it was the strips at fault, never realising that OG's temperature was so low that it probably wasn't registering.

When our angel nurse came to take bloods she told us later that her heart started fluttering and she thought something was wrong so she added a couple of blood tests that the doctor had not ordered and started praying.

At lunch time the doctor came to talk to OG and whilst he was there the student nurse came in with the blood results jotted them down on a scrappy piece of paper. The doctor looked at them, looked again, and told her to go and check them out and write them legibly, NOW! He followed her from the room.

A couple of minutes later our angel came rushing in, put up drips, took blood pressure, put an oxygen mask on OG whilst shouting at the student nurse to go get some sheaths for the thermometer from SOMEWHERE in the hospital and RUN. I asked what was going on. She said she would tell me later, but please let her concentrate on what she was doing right now. More nurses came to help, the doctor came in with the ECG machine, the student nurse came back with the sheaths and they established that his heart was OK but his body temperature was bordering on hyperthemic.

When he was all hooked up and safe she explained that his temperature, blood pressure and oxygen levels were dangerously low. his potassium level was dangerously high and he was dehydrated. This had all caused his kidneys to fail and other organs were in the process of shutting down too. He was acutely ill and we could have lost him but he should be alright now.

So...what if he hadn't been in hospital that day? What if that nurse hadn't been on duty? What if she hadn't had the "intuition" that something was really wrong? What if she hadn't taken it on herself to order extra blood tests? Were these miracles or just one of those things? Again I ask, how many times does "coincidence" have to come knocking before you start wondering?

He really should still be in hospital but he stresses out so much that it is actually safer to have him home. He had a good nights sleep last night, had breakfast, took his new steriod medication and is now having another sleep. I am a great believer in the healing powers of sleep and nourishment, so hopefully that is what he will get. On Monday we go to get his potassium levels checked again and then wait for the results of the biopsy.

As my nutty good friend the Contessa would say "praise be to God".

Thursday, 26 November 2009

At last

Biopsy done. Results in 1/2 weeks.
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A tale of two nurses.

Yesterday was "interesting" to say the least. Apart from the drama there were two things that rocked me to the core and they both concerned nurses.

Nurse 1 came out to the car when we first arrived to assist OG transfer from car to wheelchair. We got off to a bad start when I was "sharp" with her for suggesting OG stand. In my usual diplomatic way I yelled that he couldn't stand and that was why we needed her assistance. She, equally diplomatically, told me in so many words to but out. She had 35 years experience and knew what she was doing. She was right, I was wrong! Ouch!

In the full flow of the ensuing crisis her 35 years experience kicked in big time and she took no prisoners! The less exprienced nurses watched and learned from a Master. She worked an extra 2 hours until she was sure that OG was safe even though he wasn't even her patient.

When the crisis was under control she asked me about the Barak Obama book I am reading and then said "I think God has plans for him". When I
asked she confirmed she is a Christian. She cuddled me and said she had been silently praying for OG whilst going about her work. Another coinincidence?!

Nurse 2 is younger. She is so gentle and talked about her 2 boys being extremly untidy. Last night she was asking about Og's cancer and then told us that her husband had bowel cancer that spread to his liver. I asked if he had died and she said without a trace of self pity "yes, and he was only 31". She has 3 children.

So another lesson learned. Don't judge a book by it's cover.

Good news. We have just been told they are resheduling the biopsy for 1500 today.

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Wednesday, 25 November 2009

Be careful what you pray for!

The biopsy didn!t go ahead as planned. When they did the pre-procedure tests Og's potassium level was dangerously high, his temperature was bordering on hyperthermia, he was dehydrated, his oxygen level was low, etc, etc!

Panic mode! The Doctor said that it was Incredibly "Lucky" that he was in hospital today when it happened. The alternative doesn't bear thinking about!

What caused it? Add it to the list! Biopsy tomorrow? Fingers crossed!

More prayers please.
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Tuesday, 24 November 2009

THE RESULT OF PRAYER?

Is this the result of prayer, or just a coincidence? You tell me. After weeks of trying to get two liver consultants to schedule a liver biopsy at last we have one scheduled for tomorrow. This is how things went.

In response to the district nurse's request our GP finally made a house visit. When he saw how ill OG is he spent an unpresedented 1.5 hours with us and finally got things moving. OG is to be admitted tomorrow morning for a biopsy at 1600. He will stay overnight and when he returns home on Thursday I am to call the GP who will immediately start treatment to help the symptoms.

He had this treatment when he went into the district hospital and it worked well but it had to be suspended pending the biopsy because it would have interfered with the results.

So, prayers or not, we have movement. The results of the biopsy may not be known for a week or two but at least treatment can begin to help him feel better.

The interesting thing about prayer is that most times it can be explained away, but how often do you do this before you begin to wonder????

By the way, The Contessa's husband sent me through a link to a prayer network, www.emmetfox.net. I haven't had time to look at it in depth yet, but it sounds iintriguing.

Sunday, 22 November 2009

THE POWER OF PRAYER

I know, a very contentious subject, but one that I feel I have to explore right at this moment. Without being boring, I had a "spiritual awakening" as the result of many years in Al-Anon and then at the prompting of my very good friend Bridie. At that time life had become pretty much unbearable, well I thought it was, but little did I realise that it was acutally quite good! But that is another story. One lesson to be learned here, enjoy the moment that you are in, no matter how difficult things are for you.

So....with the help of good friends and the support of an excellent evengelical church in Guildford I came to believe in the power of prayer. I went from being a sceptic to experiencing real miracles in my own life. Things that just defied logic.

This belief has stood me in good stead recently and I have been nourished and supported by the prayers and care of many, many good friends. Has it been working? I can only tell you that anyone else that I have known of with Guillaine-Barre Syndrome has spent months in intensive care. OG spent 7 days on a general ward and was then allowed home. Don't get me wrong, he is dangerously ill, but yesterday we had a deeply peaceful and contented day together. That is a blessing in itself and not many people can say that.

We have now accessed the "care in the community" system and have a great bunch of nurses on call to give us help and re-assurance. One nurse has a brother that had Guillaine-Barre Syndrome in the 1980's and knows all about it. Another nurse was horrified to learn that we were going to struggle to visit the doctor for a review meeting tomorrow. She said "he will come to you, I have flagged you as housebound and he has to come". That was a great relief.

Am I deluded? I don't care if I am, it works for me and I know that I am blessed to have OG and the family and friends that I have.

My prayer "request" now is that the medics find out what is causing his liver to malfunction and the suspected blockage is discovered and dealt with. It would also be good if he could eat because he is only able to manage a bit of cereal in the morning and he has lost a massive amount of weight. I have tried tempting him with all sorts of tit bits and he has tried all the usual stuff like complan, but just throws it up again.

I would just like to end by saying thank you so much to everyone who cares so much. Whether you "believe" or not doesn't matter. Your care is a form of prayer whether you know it or not! So there!!!

Thursday, 19 November 2009

Wednesday, 18 November 2009

HOME AGAIN

Yesterday morning the neurologist bought some students to see OG and during the session he blurted out "now that the drip has finished you can go home". It was like a bolt out of the blue and my emotions ranged from "thank goodness for that" to "help! now we will be on our own again." It's quite a scary prospect really because he is still so ill and helpless.

But, stiff British upper lip and all that, we prepared ourselves to leave, not quite believing what he had said. Luckilly our daughter was on her way to visit and happened to still have his "home" clothes in her car.

Early in the afternoon the neurologist popped up again to say "before you go today you will need to see the Liver Consultant because we have to get a liver biopsy date confirmed", Ah! knew there was a catch. I don't actually think that this elusive breed of individual really exists although OG did say that he had spoken to one last week. Mind you, OG was high on morphine at the time and I'm quite doubtful that this conversation really did happen.

So we sat around all afternoon, occasionally randomly accosting the odd doctor or two to check out the facts. Yes, we did have to wait for the Liver Consultant, and no we couldn't go until he had been. When he still hadn't arrived at 1830 I said to the nurse "There is no way that a Consultant is still in this hospital at this time of night unless he is here to see a private patient". She said, "Ah, you know them so well". We left.

So, now we are out in the community again at the mercy of our elusive GP and the District Nurse. I have arranged a "review meeting" with the GP next Monday, his earliest appointment, called the District Nurse and spoke to her voice mail and made an appointment with the oncologist on Friday week. Fingers crossed that everything goes OK.

On the bright side OG had a great night last night and has slept all morning. He is so much better here at home and I am more at ease with my basic nursing skills than most of the highly paid "professionals".

Tuesday, 17 November 2009

BANKS? I HATE THEM

It's not the lions and tigers that get you, it's the rabbits that kick you to death. An old, and very true, saying. Yesterday the bank kicked me to death. Last week they raised a query because my card was being used in Cambridge! Three small transactions, one being topping up my phone I explained the situation. Job done. You thing? Not a chance!

Yesterday I bought OG some more PJs in John Lewis. The young man was very embarrassed when he got a message about the transaction on his screen. He needed a manager and was very tramatised because he couldn't summon one. I stood there patiently, time running out for me to return to the hospital. I joked "what does the message say arrest this woman, she's a shoplifter?" he smiled, sheepishly.

Finally, 15 minutes later a manager appeared. "Sorry" she said "I need to telephone mastercard about this transaction. She 'phoned, they asked to speak to me, asked security questions, authorised the transaction and asked to be handed back to the manager. "Before I hand you back let me exlain that I will be in Cambridge for an undetermined length of time because my husband is dangerously ill in Addenbrookes Hospital". There was no reaction to this. He simply went into his mantra about this was a security issued and was for my own good. "OK, I hear what you are saying, but let me tell you that there was a security issue on this card last week and the situation was explained then, so I don't accept that this should continue 'for my own good'." He then went into the mantra again. I lost it. "Look right at this moment I don't know if my husband will survive. He is very, very dangerously ill and I can do with this etc. etc. etc. etc," Still no reaction. I gave up and handed the phone back to the manager.

When I got back from the hospital I decided to treat myself to a meal at the Pizsa Express opposite the hotel. As I went to pay I thought "I'll just check this card out again". The bill came to just over £17 and the same thing happened again. I apologised to my server and explained what was happening. He was very understanding and allowed me to rant at mastercard again. It's like pissing in the wind. Again the same mantra. The transaction was agreed and off I went back to the hotel.

Sitting in the hotel room fuming about this I rang their number. Again the mantra stuff started. Again I explained my situation. He acknowledged that my comments at lunchtime had been noted on their system and it shouldn't happen again.
"But it did happen again"
"What do you mean?"
"You just told me there is a note on the system, but it still happened again"
"But it shouldn't happen again"
"Not good enough, I have enough stress at the moment with my husband being dangerously ill"

I went on to explain the whole thing again in detail but he would only commit himself to saying
"It shouldn't happen again".
"Look, I need assurances that this REALLY won't happen again, and and explanation why it has happened anyway, and I don't need your mantra"
He then tried to suggest that perhaps there was a problem with the card
"You will have to speak to the fraud department".
"OK, put me through".

He then kept coming back to me to apologise that the fraud department was engaged but he would keep trying the number.
"Ask them to ring me"
"They can't ring out".
If I had had more control of my emotions I would have realised that this was an outright lie.

Finally I got to speak to an Indian lady, went through the whole thing again, lost my temper, cried and finally said
"You know the worse thing about this? not one person has said 'I am sorry that you are going through such a difficult time, I hope your husband recovers'."
This actually seemed to take her aback. She asked me to hold and a couple of minutes later came back to me to reassure me that the card would not fail again and to give me her best wishes for my husbands recovery.

Good news is that my grandson won The Times Chalet Chef of the Year award yesterday and we are going out to lunch at The Three Horseshoes in Maddingly, one of my favourite restaurants and the restaurant that Vinnie worked at before he went out to the Alps last winter. Dare me to try the wretched card again?

Saturday, 14 November 2009

BACK ONLINE

When did internet get to rule my life? I'm absolutely lost without it. But I'm such a technophob. If it's set up for me I'm OK, but if not, forget it! But in my defence this time it wasn't my fault. It was faulty equipment at the hotel and once this was sorted my freedom returned. Well, sort of, apart from being away from home and my support network.

When Davy was in Addenbrookes in March 2007 I was so impressed with the level of expertise and attention to detail. I wondered if it was that particular ward, but obviously not because, if anything, this ward is even better.

Start at the beginning. First thing on Tuesday morning OG had the electronic reflex test, followed by ultrasound and blood tests. That afternoon a team of six neurology consultants came to see him followed later in the day by a visit from the liver man. On Wednesday he had a brain scan, lumbar puncture and more blood tests. On Thursday GBS was confirmed, an IVIG drip was started, he had a stomach X-ray and more blood tests. Friday another ultrasound, another visit from the consultant,
and more blood tests.

Not much happens in the NHS at the weekends, but he did have another visit from the duty neurology consultant this afternoon. They are very concerned that he can't eat without throwing up and is getting dehydrated so she arranged for a saline drip to be given during the night when the IVIG drip is down.

Although he is very poorly, the spark is still there. I told him that our granddaughter George had planned to visit, but her fourth child is due in 4 weeks and her youngest is only 9 months old. For some reason he has started waking in the night so she is pretty much wacked out and a 140 mile round trip is a big deal. I said to OG "she needs to get Noah sleeping through the night again, otherwise she will have two babies waking at night" "two babies?" I though blimmy, he has finally lost it. "Yes, Noah and the new baby", "Noah? no we are having Noah!". "Nice idea OG, but I think that I have enough on my hands with you right now".

Lost without my laptop

I took advice and used the services of INFOTEL to book a room in a good hotel. So here I am alone without internet connection! I will get it sorted but in the meantime I am using the good old blackberry! Steep learning curve!

OG in good hands now. Multi tests confirmed he does have Guillain Barre Syndrome and he is on a ivig drip until Wednesday. His liver function tests are still shocking and the liver man will be back to see him again on Monday to talk about doing a biopsy.

He is certainly in the right place. The level of care is outstanding with at least one nurse in this 6 bed bay at all times. OG is, as you would expect, very grumpy!!

We have been very touched by all your good wishes and prayers. Thank you so much. Bye for now.
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Tuesday, 10 November 2009

ADMISSION - AT LAST

OG was finally admitted last night at 2200. I know they gave us the runaround yesterday, but it is worth it just to get into this hospital. It is on a different level altogether to the "normal" hospital that he was in a couple of weeks ago.

He is in the neuroscience wing which is vast, ultra mordern and CLEAN. The nurses are human beings that actually engage and enter into discussions with the patients and family.

He saw the doctor last night who said they would be starting test right away and would probably do a lumbar puncture. They even, god forbid, let him administer his own medication. At the "normal" hospital they didn't trust patients to do that!

Because he can't move unaided he had a panic attack during the night. The nurse was there right away and helped him through it. He feels much more secure now.

Although it is a 70 mile schlep to get there it is well worth the effort. In fact I will be booking into a hotel for a few days until we see how things go.

Monday, 9 November 2009

PROGRESS? I DON’T THINK SO

When the consultant said last Thursday that he wanted OG admitted to hospital "urgently at the beginning of the week” I was relieved, but I had a feeling of foreboding when he then added “if you don’t hear from the ward ring them on this number”.

At lunchtime I hadn’t heard so I rang. “Your husband is not on our list, have you rang Admissions?” “No” “OK, I’ll ring them and ring you back.” Whew!

Two hours later I enquire again “No we haven’t heard anything yet, let me give you a number to ring” “Who will I be speaking to?” “The bed manager”

The bed manager’s number is on voice mail with a message to say that the office closes at 1500. The time is 1410! But, the message adds, in the case of emergency ring this number. I ring.

“No you don’t want this number, let me give you another number” “If you are going to give me the number for the bed manager, I’ve already tried that and it’s on voice mail” “No, this is the Neurology Bed Manager”

I ring the number “Ah, you actually need to ring this number” “I’ve already tried that, they are on voice mail and their office closes at 1500” “No it doesn’t they’re there until much later than that, try again I’m sure they are there”.

I try again and this time I get through “No, he’s not on our list you need to speak to --- ----- on R3” “But he is going to ward A4” “I know, but she is the person you need and she's in R3 at the moment. Unfortunately, I don’t have her number”. The person sitting beside her confirms this and asks “is that Mrs Cordner? I spoke to her a while ago” “Oh, apparently you just spoke to my colleague the neurolgy bed manager. She confirm that you do need to speak to ----”.

I track her down “I’m sorry, he’s not on the list”. Well, enough was enough. Until this time I had been just about holding things together, but this was the last straw. I broke down. “Please, please don’t put me through to someone else, I have a desperately sick husband. The consultant said he needs urgent treatment. I can't keep being batter around the system like this” “Oh, the consultant did say that he had a patient that needed urgent admission, that must be your husband. I’m just going over to Ward 4A now, leave it with me, I’ll ring you back”.

Miraculously this kind lady did ring me back. “The consultant isn’t here today, but he left instructions with his Registrar. I’ve just tracked him down and your husband will be admitted. The ward will ring you when there is a bed free.” Round and round and round and round. Like I said once before, the whole system is screwed!

Friday, 6 November 2009

SO … Guillain-Barre Syndrome looks a likely candidate

Things appear to be moving at last. We had an urgent outpatient appointment with the oncologist and the neurologist yesterday evening. They concluded that it was now imperative to get OG into Addenbrookes Hospital in Cambridge early next week for sophisticated electronic testing of his central nervous system and possibly a lumbar puncture. The neurologist suspects that OG has Guillain-Barre Syndrome. His symptoms certainly point that way.

We are then left with the liver problem which the neurologist is convinced is entirely unrelated to this neurological trauma. Both he and the oncologist think this it is more likely to be connected to cancer and the liver function tests point towards there being an obstruction somewhere. The oncologist is totally distraught that he hasn’t been able to trace the cause and last night remarked to the neurologist that he had been trying to get OG a liver biopsy but the consultant concerned had refused. By the look on the neurologists' face it was clear that he doesn't hold this consultant in high esteem. They both agreed that, depending how things went, it might be best to do this biopsy while OG is at Addenbrookes.

Although OG and I dread the thought of him being in hospital again we do understand that if this proves to be the diagnosis it is a life threatening condition that needs specialist care so we have to be grown up about it. Addenbrookes is a 140 mile round trip for me each day but it is something that has to be done.