12th August: The meeting ⚠️ ⚠️⚠️

12th August: The Meeting.

I'm not really sure how to start this blog as it's going to be one of the hardest ones I have had to do. Being so close to the end of olivers story is difficult in itself, but there's a few more blogs before it is complete. I'm going to start this of with a picture.

Myself and Frances hardly slept a wink knowing we had a meeting for Oliver, we also didn't know what the meeting was for, and that didn't help.

Waking up on the 12th August, deprived of sleep and feeling all sorts of emotions, stress, anxiety and just downright sad, we left for the hospital. On the way to the meeting me and Frances discussed what the meeting could be about. What if they was giving us an end date he could go home or what if they had solved his airway dilemma, just some of the theories we had. We also had the theories that we didn't want to think about, what if he needed more surgery, what if he was going to be in there for a longer time than expected.

Whatever was going to be said in the meeting, I knew we had each other. Holding hands and walking into the hospital together something just didn't feel good, the vibe was off and I just had this heart sinking feeling.

We walked passed the room Oliver was in and continued just around the corner to a small room where we was met by the senior nurses, doctors and the nurse that was with Oliver that day.

Keeping as calm as I could possibly be, but inside feeling like my whole life was about to change I said hello and then we sat down to conduct the meeting.

⚠️ Trigger warning ⚠️

As the meeting started myself and Frances got comfortable on the small sofa inside the room. Holding hands and staring at the 5 or so doctors ect we listened to what they said. 

(Not exactly word for word, but as close as.)

They said: As you know Oliver has had many major issues that have needed surgery and constant care. Oliver has also had the odds against him, and some of the issues surrounding Oliver are due to his prematurity.

At the moment there are two main factors we are concerned about. 

1)We are still concerned about his stomach/bowel as his stomach is now showing it is unable to digest the milk and there are further ongoing issues with his bowels, this will likely require surgery.

At this point I was thinking more surgery, this is why we are in the meeting. They clearly need our concent to go forward with the surgery, and we are both here because it's a high risk and we need to talk about the outcome.

(I was wrong)

2) They went on to say, recently we have had difficulties with olivers airway

(This is where the meetings true agenda came) 

Following on from above: (2)

They went onto say, we belive we have come to the end of the line in terms of medical assistance that we can offer Oliver.

In our professional opinion we need to think about what's next, and what is best for Oliver.

These are now our options, this is what they said.

Option one: we go for a tracheostomy, this will involve a whole lot more surgery, and by doing this we will need to proceed with his bowel/stomach surgery. This also means we will need to look at his heart due to the aortic stenosis, and with the hole on his brain we will need to have special doctors to manage this. 

With this in mind we don't belive Oliver will be able to manage all the surgery's. Even if Oliver did manage the surgery's there is no doubt in my mind that he will ever see the outside of a hospital for a very long time, and even then the outcome is likely to be the same.

By this time my mind was going a million miles per hour, they was basically saying Oliver wasn't going to make it. All I kept thinking is he has had the odds stacked against him from day one, and look where he is now, he's a fighter he will make it.  

I hadn't even heard option 2 yet and I was just in the worst possible mind set I could be in.

I asked what option two was, and this is where my life really did change.

Option two: We decide not to put Oliver through anymore surgery, and we go down the route of paletive care. This means we remove all of his medication except his morphine and fentynol as to keep him comfortable. 

I could have just cried at this moment, the ultimate fear of having to let our son go was real. This was now a real option, I just looked at fran in disbelief, this can't be real.

The doctors went on to say, "we will stick by whatever decision you make".

What do you mean what we make? We can't make that decision I thought. 

Sitting there in a moment of disbelief, they said we will give you a few days to reach a decision. My head just racing, I was getting sweaty I was looking at Frances and then to the floor. I went completely numb, I couldn't even cry, I wanted to tho. 

We had to make the decision if our son lives or dies.

We asked if we could go and see Oliver, and they gave us a few moments alone in the room before we went to see him.

I'm not sure how long we was in the room, but it felt like forever. We just held each other and cried, we just couldn't belive what we had just been told.

We decided we was going to go home that day and hold a family meeting after seeing Oliver. 

Going in to see Oliver laying there knowing we had to make a decision on his life was a different kind of pain, I would call it torment if I'm honest. Seeing him just had a different vibe, it's unexplainable.

Going home was very difficult, we had called to get picked up and people were asking questions as to why we was coming home, they knew we had the meeting, but they didn't know what it was for.

I mean we had only just found out.

Getting home and having frans family there and my family, forgetting all about covid and restrictions at this point.  We sat them down and I belive they already knew what was coming. All of them had tears in there eyes before we had even said a word. 

We explained what had been explained to us, and we had explained what we thought was best.

 

Both myself and Frances decided we was going to go for the paletive care option.

As a family we had there full support on this decision and we couldn't have been more supported.

We knew Oliver had been through so much and to put him through anymore just wasn't fair. It wasn't fair on him and it wasn't fair on us, we made that choice for him. 

To hold on and put him through more surgery's with the likely outcome the same, it would have only been for greed, to have him with us slightly longer and in pain.

I can only speak for myself about this, this was the hardest decision of my life. I can't tell you the guilt I had and still have about this choice. Whenever I think about it, I think what if, what if we had made the other choice would we have Oliver with us now, would he had shown us another miracle.

The torment of being put into that situation was living hell, i would have rathered the docs make that decision for us, then it's out of our hands. That decision, and that decision alone has cause me so much anguish and anxiety. 

On the 13th August we called the hospital and gave them our decision. I don't think I will ever recover from hearing or having to say the words down the phone, we choose paletive care. In other words we choose for our son to pass.

With the choice made we was invited to a paletive care meeting on the 14th August.

To discus how we would proceed and what would happen.

We was told we could get family in over the weekend to see Oliver, being the 15th, 16th and me and Frances would have the day with him on the 17th. 

Oliver would then have his breathing tube removed on the 18th at a time we was ready.

We had the choice to do this at the hospital or to do this at home. We chose the hospital as coming home would always be a constant reminder of that's where he passed, we couldn't face coming home from work ect to that.

Also what was discussed was the Demelza after care, this is because once the breathing tube was removed, there wasn't a definitive time frame on how long Oliver would keep going. It could be minutes or days, this was hard news to hear let alone proces. Given the choice I would want Oliver to pass quickly rather than struggle on. Fighting that in your mind is hard because your literally talking about your son dying, and how you would like it to happen, no parent should have to think this. 

Anyway the Demelza hospice was set up for us just in case Oliver did fight. (More to come on this in blog)

Below is a comment I made to friends and family on Facebook explaining our recent meetings on the 14th August.

Over the last week myself and Frances have been involved in some complicated meetings with the medical staff at the hospital.

We have had to come to a life changing decision.

After countless back and forth choices and given the information we have had, and due to unforseen circumstances and complications with Oliver-Cash we have chosen to go with the palitive care option.

This means our boy is fighting one hell of a fight, but its one he isn't going to win.

Medically he has reached the peek of what can be done to help him, and we have made the decision not to put him through any more suffering.

One thing is, he has won is the hearts of every 1 supporting him through this time, and will continue to support him as we make him comfortable until its time for us to say goodbye.

We thank every 1 for their support and ongoing support and you have made this journey with us.

We have got close family coming up to see Oliver over the weekend and we are sorry to some family who cannot attend.

Until its time for us to say goodbye to our son  myself and fran are going to spend as much time with him as possible We welcome your thoughts and prayers and we hope for a miracle.

Next: family visits.