Two Weeks

So, it's been two weeks since Dylan's episode..

That's two weeks since I thought my baby boy was going to die in my arms..

Two weeks since I was repeatedly told he wouldn't make it..

Two weeks since Mike had to fly back from Barcelona early so he could say goodbye..

Two weeks since we were told his only option was Ecmo (temporary lung bypass) or transplant which he was too sick for anyway and wouldn't have survived..

We have had our ups and downs along the way..  He currently has three chest drains in after needing an extra one on his right hand side yesterday. He is still on 2ltrs of oxygen but that is mainly for helping healing not through necessity. He is physically and mentally back to where he was prior to his episode despite the constant bursting cysts and the original worry of brain damage from lack of oxygen..

Today Dr. Helen Spencer from Great Ormond Street Hospital came to visit us here at the QMC. She is the transplant consultant for GOSH and was here to do his transplant assesment that prior to his episode was booked for Monday the 22nd. A lot has changed since that appointment was made, we now have a diagnosis and we are on treatment to stop the disease but unfortunately that will not reverse the damage already done. She told us a lot of information we had already researched ourselves.. lung transplants are not a cure, the life expectancy after one is not guaranteed but their median expectancy is now ten years with 60% surviving that long. If he gets listed there is no going back, we cannot change our mind if a set of lungs become available and risk wasting them as they are so valuable. Lungs can become available within hours or years and there is no way of predicting that so we cannot leave the decision until the last minute or it may be too late. There are many many risks with the surgery and afterwards as it is a very complex and serious operation taking up to 12 hours or even more. It is not a decision to be taken lightly and we need to seriously think about whether we want to go down this route or not..

If it was clear that it was the only option we would go ahead, myself and Mike had discussed this previously at great length before his diagnosis when we thought he was terminal. It sounds selfish in some aspects putting him through such a serious procedure if it might only give him a few more years with us but we only want what is best for him..

However, it is not a decision we need to make right now! As it stands, in her opinion, he is NOT a candidate for transplant at the moment and it is important that we give the treatment chance to work and see how well it works first.. This was actually the first thing she said to us before the assessment began and it was a breath of fresh air! We were worried we would be pushed in to making that decision today based on how bad he was on the 10th, but the fact he has 'recovered' back to where he was prior to that is very promising.

This means we can consider more effective methods of pleurodisis to stop his lungs collapsing and that as long as his lungs eventually stop collapsing and the cysts stop bursting, he should cope for now with the amount of healthy tissue he has available. Whether that will be enough in the long run is a question nobody can answer, it is just a wait and see, but for now he is doing ok!