Saturday, March 28, 2009

I really don't want to have to do this, so I'm not. A friend has already done it, and I couldn't have put it more beautifully or succinctly:


I will not be blogging again for a while.

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Friday, March 27, 2009

Ian is deteriorating now. His kidneys are no longer producing any urine and his gut has stopped working altogether. His lungs are beoming more congested and the sputum is looking thicker and more dirty. It is now 25 days since he was admitted into ITU and the consultants have told me it's highly unlikely that he's going to survive and that maybe it's getting to the time when we should start to consider stopping treatment.
I feel nauseus, scared, desperately sad and lonely, all at the same time. I prayed today for the first time since I was small child, just in case I have been wrong all these years and there really is a God up there. I begged him for a miracle. But we all know miracles don't happen.
Right now I don't want to live.

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Thursday, March 26, 2009

Yep, they grew MRSA from his sputum! He has been on antobiotics and it's gone from his lungs now, but he still has it up his nose. I think he may have been a carrier anyway, as I remember they did nasal swabs and decided to put him on antibiotic cream to squirt up his nose for a week before he had his first hip replacement seven years ago, but it's hospital policy to isolate patients with MRSA to prevent spread to other patients. So, he's now in a cubicle room on his own. It's not causing him any problems up his nose, but as he has tubes and stuff going up both nostrils they cannot treat it right now.
Of course, now I have to put on a disposable apron, and scrub up at every visit before can enter the room.
Poor Ian. :-(

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Wednesday, March 25, 2009

I said I was going to post an update last night when I got back from the hospital but forgot.
Anyway, there's been not much change. His temperature has gone up again and now he has a rash. Again. Looks lovely with the jaundice. :-/
Last night was hard. There are some evenings I visit him and I feel quite positive and upbeat, but last night I was getting scared and emotional again. Even these slight blips make me nervous. He's so frail that I'm afraid the slightest blip could knock him back miles.
I'm beginning to get so fed up with all the people phoning the shop asking to speak to him. When I explain he's not available they say they'll ring back later. When I say he won't be back later because he's in hospital they want to know when he'll be discharged. I have to be honest with these people and tell them that right now I don't know if he'll ever be coming out of hospital and it's still as hard now as it was three weeks ago. I feel like I'm choking on the words as I try to say them. If it wasn't for the fact that I need customers to call and place orders, then I would turn all the phones off.

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Tuesday, March 24, 2009

I loved this so much I had to share.

I will be leaving in 25mins for the hospital. An update coming soon.

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Sunday, March 22, 2009

It's 3 weeks today since he was taken to ITU.
I got to see a consultant this evening. His bilirubin count has gone down a bit and she thought he was also looking a little less yellow. They took him off the antibiotic that they thought was having an adverse affect on his liver and it seems to have done the trick. He had also got a bit of a fever over the weekend and that has come down as well. They have been able to reduce his oxygen and the ventilator pressure a wee bit. All positive things. Not so positive - his kidneys didn't do anything after they took him off dialysis and his potassium levels started to increase so he's back on it, his blood pressure dropped a bit so they've put him back on the drug to stabilise that, and he's not absorbing his feed again so he's back on IV nutrients.
On the whole though, tiny steps forward. I just hope he has the strength and the fight in him to keep this up.

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Saturday, March 21, 2009

Ian is stable, not much news right now. Still yellow, still sedated, still on the ventilator. However, he has not started to bleed into his lungs any more and he's started to absorb his naso-gastric feed a bit better. He looks very very thin, though.
I'm hoping that tomorrow I can get an update from one of the doctors.

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Tuesday, March 17, 2009

Well, Ian had a bit of a rough weekend. On Friday the doctors decided to turn him over onto his stomach. He had spent almost two weeks on his back, and sometimes patients with lung problems do better if they are turned over for a while, to let the lung secretions shift from the back of his lungs to the front and allow the back to do some of the work for a while.  I visited him after he had been turned over and is poor head had turned purple. His chest was propped up on a pillow and his head hung down in front and all the blood had rushed to it. They were turning his head every two hours but he looked so uncomfortable.

Saturday I went to visit and they'd turned him back over, but his whole head had swollen up! He had big fat lips and a huge swollen eye, his chin had disappeared - I didn't recognise him!  I was assured that this was temporary and that once he was back on dialysis and all that excess fluid was removed from his body that it would go down.  He was still very red.

Sunday I went in to see him and not only was he still puffed up but he a turned a vivid shade of yellow.  Now his liver was playing up.  As you can imagine, I was utterly distraight by this time.  When I got home I couldn't stop crying. I was convinced he was slipping away from me and it was only a matter of time before he was gone from my life forever.

Sunday night I didn't sleep a wink. I was expecting a phone call from the hospital at any moment and simply couldn't settle. I was up at 6am doing jobs around the house just trying to take my mind off things until it was time to go to work. Once there I phoned ITU to see how he was doing and to see if it would be possible to speak to one of the consultants about him. They agreed, and in the afternoon I visited. He looked much better - still the colour of Bart Simpson, mind you, but all the puffiness had gone and he looked like my Ian again. :-)

Anyway, to cut a long story short (as I could go on forever), his liver had a blip because he was on an IV feed as he wasn't absorbing his nasogastric feed, and it contains quite a lot of fat. He was also on a fat soluble sedative which is in a fatty emulsion given intravenously. His liver couldn't handle the fat load, and the high level of fats in his blood was clogging up the filters in the blood machine, so the dialysis wasn't working, which was causing the fluid content and toxins in his body to go too high, which was affecting his oxygen exchange which was causing his blood to become too acidic which was making his liver sick so it didn't work so well and couldn't digest the fats in his blood which were clogging up the filters ... well, you get the idea. They've completely reworked all his drugs, got him on a water soluble sedative, and he's off his IV feed for now.  So now, all he's on are the sedative and the morphine (to paralyse his breathing as he's wearing himself out fighting against the machine and trying to breath for himself).  He's holding his own heart beat and blood pressure steady on his own, so no drugs for those, and he appears to have stopped bleeding into his lungs (for now).  However, it could still take quite a long time for his lungs to clear of all the old blood so he must remain on the ventolator until his oxygen absorption improves. He also appears to be hanging on to his platelets now (he's been getting a bag of platelets every day as he was losing/using up his own at a vast rate).

I have been advise that he may start bleeding again, but we have to keep our fingers crossed that this will not happen. Once he's off the dialysis this will help as he has to have a bit of heparin (anticoagulant) to prevent his blood clotting in the machine. His liver should recover, and also his kidneys, so we just have to hope that he can continue to improve like this.

The current opinion is that Ian may have succumbed to Panton-Valentine Leukocidin poisoning. He had a staph. aureus infection in his hip, NOT a methicillin resistant one, I might add, but that sometimes the bacteria can become infected with a bacteriophage (virus) which actually makes the organism more virulent and produce this very nasty toxin. It is common in Europe, apparently, but very rare in the UK, so rare in fact, that we don't even bother testing for it any more, so we have no way of knowing for sure if this is what he had - we can't test for it in retrospect.  Apparently, people who get it usually die within 72 hours.  I think Ian is so lucky that he was in hospital when he became ill with it, and only three doors away from ITU, and was able to get treatment immediately, because if he had been discharged when he was supposed to be 3 weeks ago and taken ill at home, he wouldn't be alive today.

This evening Ian seemed to respond when my mother and I talked to him. His heart rate went up a bit and his eyelids flickered and he moved slightly. It was a tiny response but so wonderful I wanted to put my arms around him and hug him and kiss him and tell him I loved him. But I couldn't get near because of all the equipment.  However, just as I was leaving the nurse took me round the back of all the machines and told me to kiss his head. I talked to him in his ear and told him how much I loved him and how he would be home soon and kissed him goodnight and left.  Such small things, but being allowed to do that meant so much to me.  She then said I could do that any time I wanted.  I know he's not out the woods yet, but each day he seems to be getting stronger, and I feel so much gratitude towards the staff in ITU and the nurses on the ward for recognising something was seriously going wrong and getting him there in first place, that sometimes I feel like my heart is going to burst.

This is a debt I will never be able to repay.

Posted via email from MrsFirestarter's posterous

I will be posting an Ian update in a couple of hours when I get back from the hospital. Enjoy the video. :-)

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Thursday, March 12, 2009

His kidneys have started working a tiny bit better, so he hasn't needed to go back on dialysis just yet, he's still maintaining his blood pressure without drugs, and he's had his lungs washed out and biopsies taken. his consultant said things were starting to look a bit brighter.
I'm not even home from the hospital yet - couldn't wait to post this!
--- Message sent via the PocketSurfer (Full wireless Web, Email and IM at

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Wednesday, March 11, 2009

Ian's blood pressure drugs have been stopped today as he's been managing to maintain his own blood pressure. Let's hope he can keep it up.  Also, there has been a decrease in the amount of bloody fluid they have been suctioning off his lungs.

Tiny improvements, but going in the right direction. Enough to give me more hope.

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Just a little update on Ian. There has been no change. No better but no worse.  This is quite normal and most days this is all there is to report. So if I don't post for a while it doesn't mean that anything awful has happened, just that nothing at all has happened.

This is going to be a lengthy process for Ian, he's in it for the long haul for sure. The nurse looking after him a couple of days ago told me that for every 24 hours spent in ITU you can expect a week in recovery. Today is day 11.  Don't hold you're breath.

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Sunday, March 08, 2009

The bottom line is, there's not much to tell. Ian is still teetering on a precipice. He's still critically ill, still on a ventilator, still on a haemofilter machine, still unconcious. However, there have been a few minor improvements which I will explain now.

I have been assured by a nurse that his youth is a big plus in his favour.  Today I got to talk to a consultant anaesthetist (I also spoke to him a couple of days ago so today was an update) and I feel more confident that he is now on the right treatment. He is less concerned about him today than he was on Friday. I won't go into minute detail about his condition but he is now able to maintain his platelet level better, his nutrient absorption has improved slightly, his oxygen absorption has improved a bit, he's able to maintain a steady heart rate and blood pressure on his own meaning they've been able to reduce the dose of cardiovascular support drugs he's on which has improved his circulation and his hands and feet are now nice and warm. He's been given one lot of immunoglobulins to correct his immune response and reduce the severe inflammatory condition going on inside his body and this seems to be doing the trick, so he's scheduled for more today. The cardiologists are not concerned about his heart, and I have been advised that there is no reason why his heart and kidneys should not make a full recovery.

I've still been warned it go the other way, but he is young and strong (or was strong before he took ill) so I have to have hope and every little improvement is a step in the right direction. As long as he can keep taking baby steps towards getting better I am satisfied.

It is truly amazing to watch the ITU staff at work, monitoring him 24 hours a day, tweaking this, altering that, all the time supporting his system to keep him alive while he tries to heal himself.

I've been trying to think of a way to show my appreciation if he gets through this. Somehow, a tin of biscuits just doesn't cut it. Any ideas?

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Tuesday, March 03, 2009

Ok, here's what's happened since my last post.

On Sunday evening I visited Ian and he looked terrible. He had a fever, he felt sick, he had D&V and his rash was back. He also looked exhausted and kept dozing off, and he was getting breathless very easily.  I had a bad, bad feeling about it all and had to just about wrench myself away at the end of visiting time.  He said to me in a quiet voice and quite emotional, "I have never felt so ill in my entire life".

I came home and went to bed at around 10:30pm. At 12:30am my bedside phone rang. It was the hospital. They said that Ian had been taken to ITU and said that I could go along. I was there for 1am. I had to wait a while in the visitor's room, and then some consultants came to see me and told me that Ian had taken a very bad turn and was having difficulty breathing. He consented to being sedated and put on a ventilator. His blood pressure was very low and his heart rate was up, so he was on drugs to try to stabilise those, and he was on more antibiotics to try to counter any other infection that may be causing it. They then allowed me to see him. They said that he may not survive this and that we have to hope that the fact he was young and healthy before this all happened is on his side.  I stayed with him all night and most of the next day, but had to come home to sleep as I was simply exhausted.  Yesterday was like living in a nightmare. I don't think I stopped crying the whole day. I couldn't eat, and when I tried to sleep it was very broken. I think I must have been up pacing 6 times during the night.

I awoke this morning at 7am when my alarm went off, and at 7:05am I phoned the hospital, because those five minutes were such a long wait I couldn't hang on any longer. They told me that Ian's urine output had stopped during the night because his kidneys had shut down and so they had put him on dialysis.  Apart from that there weren't any other real changes.

I have never been so scared in my entire life. He is my soul mate, my best friend, my hero. I wouldn't be alive today if it wasn't for him, and the thought of losing him is too much to contemplate.  To think that almost a month ago he was complaining of an aching leg, and that it could lead to this, is terrifying. I need him to get well, I need him home with me. I love him with all my heart and right now I don't feel I can live without him.

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Sunday, March 01, 2009

It's three weeks yesterday since Ian was admitted into hospital with an infected hip.

His hip is now resolved. His staples are out and his incision has all healed up. However, he's still suffering from fevers and sickness and yesterday he had a chest x-ray as a doctor had heard some crepitations in his chest and thought he may have had a touch of pneumonia. He's had samples from virtually every orifice sent off for cultures, and a couple of days ago he had an ECG. I think now they simply don't have a clue what's wrong with him and are doing every test they can think of in an attempt to diagnose by a process of elimination.

I phoned him this morning and his temperature was at 39.9C and he was feeling awful. He can't eat at all and has been having Fortisip drinks to try to keep his strength up.

I did tell him yesterday that I was not happy that nobody had spoken to me in three weeks and that everything I knew was from what he had told me and the gaps were filled in via assumption and speculation. Naturally, I was frightened and emotional and needed someone to tell me the facts. Yesterday afternoon me and his mother got a chance to speak to someone in a quiet room and had all of our questions answered.  I feel a little less panicky now, but I will remain deeply concerned until they find out exactly what is wrong with him.

I'll keep you posted.

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