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!!