Keep swimming

Despite starting off quite well, yesterday turned into a horrendous day. We’d had a good appointment at Orthotics (believe it or not they were impressed with Samuel’s new Superman shoes and think they will be perfect for him), then we popped into NICU and had a nice catch-up with the nurses and one of my favourite NICU doctors.

But then it all went wrong.

In the afternoon we had an epilepsy clinic appointment with Samuel’s doctor, Dr H. The appointment didn’t started off brilliantly as we had to give Samuel a dose of Midazolam in Dr H’s office. It had been eight days since Sam last had it which given our recent bad patch isn’t actually too bad.

We talked about Samuel’s medicines and our plan for them moving forward (I’ll tell you about this another time).

He then began saying that because we go the extra mile with our care of Samuel and react quickly, we’ve given him longer quality time. Which of course is nice to hear. But without saying the exact words, he said that Samuel is living on borrowed time. He’s outstripped his life expectancy. Which of course we are very aware of.

This led him to say that he wants us to think about an advanced care plan for Samuel which basically means what to do if we are faced with the possibility of Samuel going into intensive care.

Dr H said he doesn’t think we should put Samuel through intensive care as it could be gruelling for him & even if he recovers it won’t change his underlying condition. There is ‘no light at the end of the tunnel’ (he compared it to a scenario where a child has meningitis and then makes a good recovery). This came as quite a blow to me. I’m very fond of Dr H and always feel he knows and says the right thing about Samuel’s treatment and care. So I felt so disappointment that he felt that we shouldn’t throw everything at Samuel.

He wanted to discuss it while things were okish (which turned out to be quite ironic thing to say given the evening we then had), rather than when things could be quite fraught if things get crappy. He explained the different scenarios of intensive care and how gruelling it could be for Samuel. He said that he didn’t think he should go through that given that at best he would come home the same, his underlying condition would never improve. But in the cold light of day, when things are ok, in my mind I could overlook Sam having a line put in or being ‘worked on’ to be brought back. If that meant he would be able to come home and be just as he is now….but then if we do find ourselves in that scenario and I see it before my eyes and what it all really means then I may feel different. We may feel very different.

I just never want Samuel to be in pain or his seizures worse. But how on earth could they be any worse?

So we went home feeling quite low. And just to add to it all, Samuel had a really bad evening and overnight, so it was all a bit rubbish really.

But he seems to be sleeping (well snoring) it off this morning, so who knows with Samuel, today could be a very different day.

I don’t really want to dwell on yesterday too much. I don’t want to waste good Samuel time by worrying about what decisions we will need to make. I feel strongly that we will know what to do when decisions need to be made. I think our gut will tell us.

Oh and before you say that we are so brave and so on, we aren’t. The idea of making those decisions and maybe one day we wont bring Samuel home, well it broke my heart. The idea of not having my baby Bear to cuddle anymore is just unimaginable. I’m not daft, I know he’s living on borrowed time, but to have things spelled out to you, well it is never easy.

We are just like you, we are normal people, normal parents. But we have to deal with the very hard side of what life throws up. We just want to do everything we can for Samuel and everything right. We will never give up, we will just keep swimming.


12 thoughts on “Keep swimming

  1. What an awful blow.

    I know you say you aren’t brave, but I think you are. You do everything you can out of love for your boy (though I know you would never do anything else) and that is amazing. Sending lots of love xxxx

  2. Think you’re right, you will just have to go with your gut feeling. Hope today is a much better day for you x

  3. I spent some time in Demelza House Hospice a few weekends ago, where I met the most amazing family. Their beautiful 8 year old boy was very soon leaving has family and would not be returning home with them from the hospice. I have never felt so privileged and humbled in all my life. What I witnessed were the most hard core and loving family pulling together for their son. One morning the boys Mummy pulled his covers up to keep him warm. He opened his eyes and looked into hers to say thank you, the first time I had seen him do so in days. Wow, his love for her was so clear and she made him feel so truly safe, his whole persona was at ease and he was a pleasure to be with. I would then see him cuddling his Daddy and I can’t describe how it was to see something so unbelievably and unimaginably sad but yet so truly beautiful. They had ensured their son was no longer in pain by giving him a syringe driver and that gave them so much peace knowing his pain was managed. I had a snapshot of something I never thought to see and I cannot express how much while my body was aching for them and their pain I was also so proud to be a fellow human being and parent with a vulnerable child as it was absolutely beautiful. I think what I am trying to say is what you have discussed with your Dr and knew in your hearts is unimaginable but you must try not to be scared of something terrifying as so far you have given your son everything he needs and will continue to, whatever that means. Samuel will always feel safe with his Mummy and Daddy and that is so powerful. Your hearts will guide you and your right I don’t believe any pre-discussed plans or logic will be of use. Enjoy your cuddles with your little bear and of course your man………and I’m sending you a very very strong hug and Samuel a slightly more gentle one 🙂 x x x x x

  4. Hi, I’ve just caught up with your blog after a couple of weeks. I’m so sorry to hear things are difficult at the moment. I think you’re doing amazing. I’ve been having a pretty big wobble for the last few weeks but the way you staying strong for Samuel and always putting him first in inspiring me and encourages to me to just keep going. While Williams seizures are ok right now, we’ve had some pretty awful times in the past. Let me know if there’s anything I can do to support you in any way. I’ve never met you guys but you are one amazing family. Lots of love xx

  5. I’m so sorry…which is not enough, but know that prayers are with you. “The talk” as I call it is never easy. Based on experience, go with your gut. You will know when it’s “time” and trust that you will make the best decision, as you have been for your little guy. Remember the doctor’s do not know everything, especially given that there aren’t many cases like our boys. He is, and continues to go beyond what the doctors have predicted. Don’t give up hope! Our boys are fighters!!

  6. I know there is nothing I can say that can make things better but sending you lots of hugs. I really do think you are an amazing mother and a very special lady. Please pass on lots of hugs to Samuel too. xxxxxx

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