Day 11

Could not concentrate today because i knew i had the appointment with Mikeys consultant today.
So the morning passed in a haze and i went home at lunch time to find Tim had cooked lunch again.
I asked if he had heard from anyone today. Tim said his sister had phoned him and said it doesn't get any better does it. Tim asked her what she meant and she said well about Mikey she thinks of him in the morning and before she goes to bed. Tim said well he hoped things would improve as time passes and Jen said it wouldn't, Tim said how do you know that and Jen said through experience!!!. Tim said he just felt totally bemused by her insensitivity and then let her ramble on about trivial things and wasn't really listening. I asked Tim if it was nice for him that she had made contact and he said not really, she spoke about Tom and him but never once asked how i was. I told Tim it didn't matter at all but he should keep any door open to communicate. I hope that relationship improves.
We go to Papworth. The closer we get the more teary i get. Tim said it felt just as though we were going to visit Mikey.

Tim stayed in the car as he didn't want to go in. Once through the door and heading for the CF unit it became very hard and i wasn't sure if i could do this. Still i met with Mikeys physio who was very kind and said she would find Sister Carolyn. Angie Lyons came round the corner and just hugged me and to think she was the first nurse we met when Mikey went to Papworth and she went with him on the day he died how bizarre is that. Angie asked where Tim was and i told her and she said she would go and see him and have a chat

Do you know im not sure i can write anymore i will have a minute and then try.......

Helen Mikey consultant was incredible the compassion just oozed from her, she spoke to me with such genuine care and concern it was heart warming, she eased my soul. How can one person do that does she know what amazing gift she has and how does she do this time and time again?

I was firstly reassured that Michael was very very aware of the risks regarding the possible outcomes of the operation. This is going to be muddled but reader bear with me because im just writing as i try to recall what was said.
I asked why we hadn't recognised that he was so ill and how we had normalised his situation. I was told we are not the only parents who have said this because the type of person Michael was he kept things to himself not only to protect us but in order for him to cope. He was making some very courageous decisions about his health and could not deal with seeing his family upset as well. The fact that we treated him normally in fact probably reassured him that things would go well.
Michael was very poorly but even they did not know just how bad his lungs were it was only the result of the operation that demonstrated this. Helen said all they can really do was to make guesses and this would also bring about a degree of risk. I asked why Papworth turned him down. Helen said they make their decisions on who would benifit the most from the lungs donated and they have to chose those who have the best chance. They felt that Mikey would not be able to breathe unaided if he had surgery and the donated lungs would be lost as well. The fact that he had such large kidney stones and could lead to renal failure and complete organ failure was another risk they were not prepared to take.

I asked about Newcastle and why they told Mikey that they usually see patients worse than he was but that was only in March and now he passed away 5 months later.
Helen said there was such a delay in getting Mikey up to Newcastle for the assessment and that they had been really positive about his general condition particularly the SMA to make sure that Newcastle would see him. There was no way that Mikey could have a transplant unless the kidney stones were done, so he had no choice it was risk the stones being taken out or accepting that he would not have a transplant. Helen said Mikey was so desperate to have a normal life that as a team they had a duty to ensure they did every thing they could to help him achieve that.
The delay from Peterborough and getting there decision also delayed things and his condition was getting much worse.
When they contacted Addenbrookes they were lucky that things got sorted quickly, however there was a great deal of discussions regarding the possible outcomes and what was best for Mikey. It had been decided that IF it was possible to remove the two smaller stones and Mikey tolerated the anaesthetic they would go for the big one. The equipment used to go urethrally may not have been sufficient to reach the large one and they would risk turning him and surgically remove that one as well because there was no way he would cope with two anaesthetics. If this was not done Mikey would still not have been able to have the transplant.
Mikey had the anaesthetic and was put to sleep, this went well he was put on a gentle respirator and this went well initially things than started to change his lungs would not allow the air to go in and they felt that his lung had collapsed they tried various medication to try and stabilise him and a change of ventilator all with no success. His blood gases at this time was 24 and normal blood gases are 4 so at this stage Mikey was already critically ill with little hope of recovery, he was taken for a scan which showed his right lung had completely deflated. Normally an area of lung is affected but to inflate the lung would have been impossible due to the area they would need to put a drain in.
Helen said Mikael was asleep and unaware of any of this. When he struggled in intensive care and he gripped my hand and i thought he was trying to get up it was in fact a seizure and or an involuntary action due to the carbon dioxide toxicity. When blood gases are at 9 the person is already very very sleepy so at 24 the chances and definite probability was that Mikey was in a coma at that time. How ever being on the respirator was very distressing because the air just could not get into his lungs and this is why it was much better for Michael when he was taken off and he did in fact breathe normally for some time. He would have managed to come off the respirator had he have got onto have a transplant. That was sad to hear.

I asked if i had stopped him being woken up because He had said that if things went badly he wanted to woken at any cost to him to say his goodbyes to us. Helen said no that was not an option he would have been in so much distress and they would not have been able to inflate the lung he would have known he was dying and that there was no hope everything would have been for nothing. BUT he couldn't have been woken because of his carbon dioxide levels were too high.

It was now they realised just how bad his lungs were and that Mikey would not have survived CF for many more weeks if had nowt had the operation.

I will explain about his lung collapses and what would have happened had he not gone to sleep and passed away tomorrow its just too much tonight.