Archive | November, 2011

Kerry doing well

28 Nov

Hi all, this is Phil writing from Harefield and first time I’ve tried to write Kerry’s blog so hopefully this will work!

I spent a couple of hours with Kerry yesterday morning and she was vaguely aware but very confused, in the evening Judy was back over and we sat with her for a bit and she seemed to be more and more aware of us. This morning Kerry asked what had gone on and where was she so we again explained all that had happened. I also told her that it was Mr Simon who had performed the surgery so she would only have the little scars and she smiled.

Also her told her about our naughty Disney who escaped again on Sunday through the cat flap at my parents house. Kerry definately mouthed bad dog!

As she is on the ventilator she cannot speak so we are having to become lip reading experts which is very hard for us and also very frustrating for Kerry. This afternoon I spoke with Mr Simon who said he was very pleased with how she is doing and the next aim is to get her off the ventilator and in his words “get her out of here!”. Difficult to know what to say to the man who saved Kerry’s life so I could only say thank you on behalf of everyone.

Kerry was about to have her wash and dressings changed when I left her but seemed quite happy and smiled when I said Judy would be in later on and I said I’d be back to say gnite. Thank you to everyone for your support and continued prayers and wishes please keep the positive thoughts coming x

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Little update

27 Nov

Hi everyone,

Just to let you all know, Kerry is still stable and doing well in ICU. The doctors are very pleased so far with her progress, however keep reminding us that she has a long recovery ahead and it will be slow. On Friday her kidneys were not working properly so she is now on dialysis (which we have been reassured is very common post transplant and will get better).

I went over this weekend and it was so so lovely to see her, however the situation is indescribable (so I’m not going to try as I don’t even know what words to use). I will tell you though that she is being just so brave and is doing well. The doctors and nurses are doing an amazing job and taking such good care of her.

I will keep you posted with any changes, however at this stage it is baby steps. Again, thank you so much for all the prayers, comments, wishes they mean so much to us all and please keep them coming to Kerry for her recovery.

Love Kim xxx

The tale of the Transplant….

23 Nov

I cannot quite believe I am writing this (and I wish Kerry had the honor of doing this herself) but……. KERRY HAS HAD HER TRANSPLANT!!!!! She is truly incredible!

At 7:30 am this morning we were told that some lungs had become available and they were to be tested in the next hour to see if they were suitable! At 11am Dad phoned to say that the lungs were suitable and that Kerry would be having the operation (we are extremely lucky that the surgeon Dr Simon was on duty as he was the one saying yesterday that he would still operate on Kerry despite the blood clotting!) Dad flew over to be with Mum. We were told that the operation usually takes around 6 hours but given Kerry’s critical state this would be more like 8 or 9! We were also told it was very risky and that this was her last chance.

We just heard at 10:45pm that Kerry, against the odds, is stable. She has her new lungs inside her. She is still on the ventilator, however the Ecmo machine has now gone! The next 48 hours are critical and she has a long road ahead, she is in no means out of the woods yet but at least now they are working with the new lungs! They said that they are cautiously optimistic. They have never performed the transplant on anyone in such a critical state and therefore her recovery will be riskier and slower and anything could go wrong at anytime- we will take each day as it comes. Harefield have been amazing and I can’t quite comprehend the surgery that has been undertaken, it is mind blowing- but we cannot thank them enough for all their hard work and time giving Kerry this chance!

So that brings us to now……. after possibly the longest day in the World, the best possible outcome for today has been reached. We, as a family and Phil, cannot thank everyone enough for all your support, kind words, prayers and thoughts- it means so much and has helped us and Kerry through this roller-coaster of a week (and all the crossing fingers, toes, arms for new lungs worked!!) Everyone keeps thanking me for the updates but it’s the least I can do, especially as so many of you follow this blog and care so much for Kerry! 

All our thanks

Kim xxxxx

Little update

22 Nov

Hi everyone,

I wish I was updating this with good news.

Further to my last post, Kerry was successfully put onto the Ecmo machine, however this was with the intention to bring her off the ventilator (which would give her more time).

The doctors struggled on Thursday and Friday to bring Kerry round on the Ecmo machine or to get her to start working with the machine and therefore off the ventilator. They then decided to do a tracheotomy in order to help Kerry to start breathing for herself with the new machine.

Unfortunately the weekend again bought little to no change. The doctors and nurses were constantly working to adjust levels to help bring Kerry into consciousness comfortably without affecting her oxygen levels. Sunday evening we were told that they had had a bit of a breakthrough as Kerry was starting to use her muscles herself and they were able to turn the ventilator down just for support and oxygen, however they were still not able to bring her round.
We were informed this morning that there were issues with blood clotting and therefore even if lungs did come up she would not be able to have a transplant until these levels are sorted. Since then, there has been no real change although Mum spoke to one of the surgeons this evening who reassured her that if the lungs did come up then they would operate. She is still on the ventilator and unconscious and there is no plan to try to change that at present.
Edgar and Tom went back over the weekend to give my Mum a 24 hours break and to sit with her in intensive care (unfortunately I could not go as I had a cold and therefore could not risk passing germs onto her or any of the other patients). They have both told me she looks peaceful and comfortable, which she certainly hasn’t been for a while leading up to this.
We can’t thank everyone enough for all the messages, thoughts, prayers and kindness and they all continue to help Kerry. We are still praying and hoping that the right lungs will come up very very soon.

Love Kim xxx

17th November 2011

17 Nov

Hi Everyone,

Well I don’t really know where to start….. Kerry has literally had the most traumatic 48 hours imaginable.  I will do my best to explain all that has happened.

I will go back to Tuesday, Kerry settled in well at Harefield however I received a text from Dad around 5 saying that Kerry had had a bad day and ventilator options were being discussed. The surgeon went to see Kerry around 7:30pm, for what she thought was a little update, to inform her and mum that there was a possibility that there might be a pair of lungs on their way for her. He explained that there was a non- heart beating organ donor on a life support machine and the professionals had come to the decision that it was this patient’s time for the machine to be turned off. The conditions in which the transplant would be possible were; obviously all the matching checks and assessments of the lungs themselves would have to be carried out and it was also explained that there was a time constraint on the donation possible (if there was longer than an hour between the life support machine being turned off and the patient’s body shutting down then the surgery would be too risky as the lung would have been out of use for too long). Kerry was therefore completely prepped for the operation and was told that they were going to turn the life support machine off at 1:30am that night so by 2:30am she would know if she would be in surgery for the transplant at 3am. I found this wait traumatic and scary so I cannot even begin to comprehend what Kerry went through, however Mum said she was very calm and brave as always.

At 4am, we were informed that the time unfortunately this time the transplant would not be possible. Although this was obviously a disappointment for Kerry, it was obviously not the right pair of lungs for her. In addition, positives can be drawn from this experience in as much as Kerry has now had her ‘false alarm call’ and also knows all of the preparation procedures so next time (hopefully the time, she will know what to expect).

Quite naturally, all of this waiting and anxiety had left Kerry feeling quite sick so she was given an anti sickness drug (so sorry but I have forgotten the name of it exactly), which I think was given to her via a drip line. Kerry had had the drug previously however never so strongly or via the drip. Kerry had a dramatic reaction to this drug and to be blunt it very nearly killed her! Kerry was rushed to ICU as she took a dramatic downhill turn and Phil and Dad were told to get on next flight (so at 5:50am they rushed to the airport to get on the red eye). Mum and Kerry have both explained how close they thought she was at this point and Kerry told me that she was so close to giving up and the only thing that kept her going was the knowledge that Phil and Dad were on their way and she wanted to say goodbye! However, in true Kerry Maletroit style she pulled though and managed to stabilise herself and fight the reaction. By the time Dad and phil arrived she had been through the worse and was coming round again.

By this point, Tom Edgar and I were besides ourselves with worry and just couldn’t predict what would happen next, every text bought another, dramatic turn. Mum and Dad got in touch to tell us that she was recovering from the reaction well and would be moved back to the ward shortly. It was then that we decided to go over and see her. Phil kindly came to pick us up from the airport and drove us to Harefiled. When we arrived in the room we were immediately informed of the most recent near miss…..

Kerry, Mum and Dad had been in her room when suddenly Kerry had gone extremely pale and almost a bit green. Mum knew something was wrong and called for the nurses. Mum told us that Kerry was not responding to them and was near to unconsciousness. After the emergency team rushing back into her room, they discovered that the tube on her bi-pap machine had become undone and therefore Kerry had not been receiving oxygen. She was recovering from the episode as we entered the room and did look a lot paler than usual. She was surrounded by machinery and looked so small amoungst it all! She had her Bi-pap machine back on and in action so could talk, however it can be hard to hear her when she’s on this.

Having said this, she soon perked up and we have such a lovely time with the Kerry we all know and love. We were there for a few hours and all caught up, she was telling us her account of all of the recent events, joking, laughing, then getting cross that she couldn’t laugh and telling us not to! She was in true Kerry form and it was delightful to see her so well considering everything! We left her to rest around 9pm as she was exhausted and needed to have things sorted for the night time. We all loved going to see her and were so grateful for this time with her. It was good to see Mum too who was also exhausted but holding up really well (in true Skinner form!) We went back to Auntie Jane’s with Phil as Mum was staying for another night in the family rooms (which are like first year uni halls) and Dad went off to find himself a hotel nearby.

At 5am this morning we were informed that Kerry had had another bad turn….. she had been in the room with one of the nurses (a really lovely nurse I have been told) when suddenly she just stopped- her lungs decided to give up completely and not work for her. This was all very sudden and unexpected- she was rushed to ICU before Mum could even get over from the family accommodation (which is a 2 minute run!) We were told that Kerry was going to be put on the ventilator as she was no longer breathing for herself. She was promptly hooked up to the ventilator and made unconscious (which was a big risk in itself as they were unsure if Kerry’s lungs would take to it being in the condition that they are in!). Luckily this was successful, but really very scary and also the very last stop for Kerry really. Again, apologies for any naivety, but it is my understanding that on the ventilator, although this allows Kerry’s lungs to rest and her to be able to rest the problem with the ventilator is someone with as poor lung function as Kerry’s would probably not be able to come off the ventilator once on it and also as your other organs are not functioning normally there is a time constraint on how long she could be on it and still have a transplant.

Tom, Ed and I got on the first flight home as there was nothing we could do to help and didn’t want to get in the way. We felt so fortunate to have seen her so well the night before! When we landed, we phoned Mum for an update around 9:45am. She told us that Kerry had gone into surgery to be placed on a special machine called the ‘Ecmo machine’ which is like a ventilator in that it eliminated the need for the lungs to work. The machine aerates the blood for you and without use of the lungs. Again, apologies for any ignorance on this topic, but my understanding is that the benefit of this machine as appose to the ventilator is that it gives Kerry more time as you it does not work the other organs for you so the body stays stronger for longer (and more time to allow to wait for a transplant) and also Kerry can be conscious on this machine. This machine has only ever been used on 3 other patients (all of which have gone on to have successful transplants and one of which was after 5 weeks on the machine). As it is so new they only decide to try to make it work on very specific patients as it is a very risky procedure to get the patient on it. The decision was made that they would try this machine on Kerry (being so young and a couple of other positive factors made her eligible). The operation was long and came with great risk. I think the op took around 4- 5 hours- Phil text us around 1:30 to say that the machine had been successfully attached. I did not hear too much else during the afternoon however was informed that the first 24 hours are critical.

Around 5pm today I was informed that Kerry was OK and was still on ventilator too. The plan is for them to try to reduce the need of the ventilator slowly so that Kerry is just relying on the Ecmo machine. At 5 they were trying to bring her back to consciousness slowly and app she had made a couple of movements and her eyes looked like they were trying focus. The big thing now is for Kerry and the doctors to determine what Kerry does and what the machine does to keep her breathing. It is all very scary but we are all keeping positive that this will be Kerry’s bridge to her new lungs.

It is unbelievable what she has been through in the past couple of days, not just the turn of events for how much she has tolerated and fought! She is just incredible and continues to impress us all!! Mum, Phil and Dad have been brilliant and staying really strong and positive.

Thank you so much for all you texts/emails/kind words to Kerry and all of the family, it is so greatly appreciated! Now if you could all please keep your fingers, toes, arms, everything crossed that her new lungs come very very soon!!

Kim xxx

16th November 2011

17 Nov

11/11/11

11 Nov

Kerry has been moved to harefield today to wait for her new lungs! Apparently it was quite a journey in the ambulance with all the equipment and specialists but she is there now and doing ok. Things are pretty serious but Kerry is being incredibly brave and knows how much were all thinking of her and love her! She’s settling in well, comfortable and feels safe and happy to be there.

Thank you for all your kind words and wishes!

Kim x x x