Slow and steady

Albie has been paralysed and sedated since Wednesday morning’s arrest.  The ECMO machine oxygenated his blood so during that time his lungs weren’t working. He lay almost stock still and eerily silent. It was far from right. Now that he is off ECMO his lungs are having to work again – first on the ventilator and then, eventually on their own. Its a bigger task than I initially thought. They are filled with gunk from being still and the morphine he is on represses his instinct to inhale so the ventilator remains necessary for now. Today to wake him up a little bit, and to encourage him to start to breath a bit more himself, they reduced his morphine dose. It didn’t take long for Albie to begin to wriggle, and then, to swim up from wherever he has been and open his beautiful eyes again. They were crooked, bleary, drug-addled pinpoints but there our gorgeous Albie was. Hello honey, how I have missed you, welcome back.

He’s pretty beaten up. His zipper that runs up his chest is a lot bigger now than it was on Tuesday, he has drain sites, and cannulae sites, and marks all over his head from the brain monitors. He has  IV lines in both his hands and his neck. Marcus says he looks like he has been eaten by a hungry badger. I am afraid at the moment he’s probably right.  But in a while,  I think his scars will be so beautiful. What a story of resilience they will tell.

Albie has been on a substantial amount of drugs since his surgery last Tuesday and now he will be slowly weaned from them. Its almost inevitable that he will suffer a morphine withdrawal. Even today’s reduction caused massive twitches and shakes in his body and that’s just the beginning. The consultant  has warned that Albie will be waking from “the bender to end all benders” and that it is often in the extremely irritable, inconsolable days that follow ECMO that many families crumble.  I hope we will be different to this. I hope we can remember where we have just come from. I want to be grateful to hear his cry again, be thankful to hold his body. Its rough and tough – my poor boy having to suffer drug withdrawal – but by heck, its a darn sight better that what we were facing a few days ago.

So we can’t yet say Hooray! Its Over! but I can imagine that day. And until then, this life, right here and now in this Intensive Care Unit, is pretty awesome. Yes, its filled to the brim with hurt and love and grief and light – but at least its filled to the brim. How close we came to something a lot more empty I just can’t tell you.

28 comments

  1. Oh my, Jared just has to see me with tears rolling down my face and he knows that I am reading an update – you really are amazing. I am so grateful to hear from you again and to know that Albie is fighting so very hard to be with his mummy and daddy. Prayers and love still flowing your way xxx

  2. No words just tears, hold on, just keep holding on – we all are too. We love you and sending all our prayers and strength to you, Marcus and sweet Albie x x x

  3. You can do it! You are strong, resilient and so full of love for Albie. Remember that it’s fine to just be human and be angry, and in pain, and tired, and hurt about what’s going on as you go through this, but I have so much faith that you will get through this tough time. And we are all here for you. I only wish there was more I could do to help and could take some of that burden for you, for a while.xxxxxxxxxxxxxxx

  4. Tonight once again you will all be in my prayers. Praying for strength for all of you to get through this time and for precious albie to continue to get stronger and healthier.

  5. Oh Sarah, you make such magic with your words! Tears well whenever I read a new update. I’m just so thrilled to hear how well Albie is doing. Wishing you all the strength you need to get through the next few days of withdrawal.
    Take care xxx

    • Amen to all of the above. Is so heartbreaking to hear what such a little boy has to go through, but at the same time so amazing to hear what he has made it through so far and how far he has come so fast. I can’t even imagine what you have been through over the last week. Praying for a gentler withdrawal than you’re expecting and strength for you all over the next few days. xxx

  6. Love to you all -so glad to hear of the creeping progress.
    When Angus was in the bath tonight, he lay in the water and said..”that wee Albie..Hows he doing?” I explained how he had a rough time and traced my finger done his belly to explain about the operation, he said “Wow hes tough! . I think he can handle my rocking Horse now!(he has been struggling with giving it up and says Albie is too small). that’s a nearly 5 year old’s perspective and ours!. You go tough boy! and we’ll deliver the RH in the near future-a big boys toy to look forward too.xxx

  7. I’m so glad things are going good.
    You are all so amazing-Albie for fighting so hard, Marcus for keeping the humour that I remember about you, even in such hard times; and Sarah for the strength to write the beautiful words that you do that show us all the journey you are on with it’s ups and downs in such personal places, when I can’t even get the words to explain this properly- you not only keep us all in touch with Albie’s journey and keep us rooting for him, you also have made me really appreciate how lucky I am , how truly precious my children are ( yes you do forget sometimes in the long grind of normal days) and how amazing and special life is.
    So thank you so much for that- you have given a truly special gift.
    I think about you all throughout the day as I do the other daily tasks, there is a still place in me that is thinking of you all , and sending much much love.
    keep strong, keep remembering how amazing it is, but don’t beat yourself up if you crumble a bit- that’s part of it too and you will need a space where you can’t hold it together for a while and remember that’s ok too. Loads and loads of love to you xxxxxx I hope one day I will meet Albie , and you too Sarah. Be nice to see Marcus again too ;0) xxx

    • Just like they say “slow & steady wins the race” & I know you can do it Albie-once again you’re in my prayers-Keep fighting wee man!! Sending heaps of hugs, loves & prayers to all-I don’t know you or your family but my Nana always said “we gotta alot of love inside us all & we need to be sharing it round & not just to our own kin-share it to those in need of a little bit more” So I hope my “wee bit” helps wee man-thinking of you xxxxx

  8. Hi Sarah and Marcus,
    Lots of love, thoughts and prayers still coming your way from Aunty Tui, myself ,James and John. The whole prayer team at Citywestchurch in New Plymouth is also sending their love and prayers for the road ahead. So grateful for this way of being able to keep up to date and also support you two and all the staff as Albie continues his amazing journey back to full health . Janice Mannex

  9. Lots of love, and a bit of practical information: High dose vitamin C can help lessen symptoms of opiate withdrawal SIGNIFICANTLY. There’s a lot of positive medical research on this available, and I’ll add my own “anectdotal evidence” to it as I had several rounds of needing opiate painkillers for several weeks. After coming off them the first time (awful) I did my research, then took my vitamin C and had maybe 10% of the withdrawal symptoms the second and third time around. I also remember very positive research on IV vitamin C and E in combination to prevent infection in burn victims. xxx

  10. Been thinking of you all, especially little Albie. Praying so incredibly hard that things will go smoothly for Albie and you can all muster the strength to get through the days ahead. I am sure this has alreayd taken its toll on all of you but keep fighting!

  11. We’re sending all our love to the Albatron. Ami and I miss him and his choice-as parents terribly. There’s not a day or even a moment that goes by without us thinking of you guys.

    Lots and lots of love from Iceland,
    Tama & Ami

  12. Here I am, feeling like a right goober crying in my office! I hope you have a chuckle at my expense 🙂 A few tears of happiness are shed for you all today but I do think Ranginui may be taking it to the extreme, it’s persisting down outside! Lots of love, Riria and Alex. xoxox

  13. Hang on in there Sarah and Marcus, we are right behind you with our prayers, what a fighter that dear wee man is.
    love Adie n David

  14. Grandma and Grandad are praying so hard for our beautiful Albie. Prayers are winging there way to N.Z. from all over Lancashire and the U.K. We think of you all every day and wish we could be there to support you and hold you close. Albie is one mighty tough fighter and loves his mummy and daddy to bits. He is listening to every word you say to him. Take care all of you and keep strong together. All our love.xxxxxx

  15. Albie is incredible! His scars will be ones of love, courage, resilience and tenacity indeed. I can’t wait to cuddle your wee man. Love love and love xxxxxx

  16. What a champ Albie is. We are still thinking of you all and sending lots of healing thoughts while you get through this next challenge. Albie is clearly a courageous and strong character. Just like his Mum and Dad. xxx

  17. So glad to hear Albie is so strong as are both of you. I get questions about how he is every day at school and everyone is thinking of you both and sending strength and love to you all.

  18. Keep it up you guys. Team Hoppy is one strong team! If anyone can find the strength and resilience (and humour) to keep going it is you guys! Kia kaha for the days ahead xxx

  19. It’s absolutely wonderful to hear that Albie is making steady progress!! We read your blog every day, hoping and praying that your little soldier is getting better with each day. He is such a fighter! Stay strong, guys! Lots of love and hugs from the UK. xxx P.S. Sarah, your beautiful writing never fails to make me cry! (Natasha)

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