Today was a year to the day since Easter Saturday 2016.. the day we said goodbye to our little boy and started the process of 'active withdrawal' i.e. stopping treatment and removing ventilator support.
We told them the day before, when we were pulled to one side and advised to consider switching off Dylan's ventilator, that we needed more time and we arranged to have him baptised. Being that it was Good Friday that was no easy task but the hospital chaplain went above and beyond to contact the Catholic priest who came and did the ceremony for us.
Despite the situation, his words stuck with me that day, "when Dylan is better I will redo this and baptise all three boys together".. however, Dylan worsened over night and was at a very high risk of cardiac arrest so we discussed and agreed on a DNR and just prayed he would get through until morning so the rest of the family (his brother etc) could be by his side. Of course then at the point of saying goodbye he showed signs of fighting so we held on.. which again somebody else had eerily predicted.
Father John came back to Dylan's bedside on Easter Monday afternoon and said a healing prayer and that was when the real changes and improvements slowly started to happen!!
So today our THREE superheroes were baptised together by Father John at his church, surrounded by family and their new God Parents. We chose this date as a way to turn a day full of traumatic memories into a day full of happy memories for future years to come.. <3
Sunday 26 March 2017
Sunday 19 March 2017
Memories of Easter 2016
This last 12 months have gone by in such a whirlwind and time has crept up on us whilst we've been busy enjoying life!
The date that Dylan collapsed at Little Nippers came and went with only a little reflection and anxiety from us.. but this week is the big one. Of all the times we've almost lost Dylan the events of this week are cut the deepest. [It also doesn't help that Dylan's story is about to run in the media again on Tuesday and yet again it focuses on me and my supposed guilt and generally makes me out to be a terrible mother but I digress. Please excuse my terrible writing this evening!]
Yesterday was the day he stopped breathing on the ward and frightened half the staff, patients and families. Today was the day he had his MRI and CT and we hoped he was stable enough to be extubated fairly swiftly but of course then he just got sicker and sicker. I remember the tension pneumothorax from the ventilator and him going grey, the rapid blood transfusion that instead of being dripped in slowly over a few hours was literally forced in as fast as possible by a nurse squeezing the bag. I remember the further tension pneumothorax that almost sent him into cardiac arrest.. one of the consultants stuck a needle in him before the X-ray even arrived as he was literally going on us. I remember being hysterical, not wanting to leave him but not wanting to watch as they pumped adrenaline into him and prepped him for more chest drains. I remember seeing the oxygen level come up from 30% to 80% and not feeling relieved because I sensed it was going to keep getting worse which it did.
I remember feeling utterly defeated on the 25th and then completely in denial on the morning of the 26th. Even though I saw it coming and wished his suffering to end I didn't want to loose him. I was torn between wanting to be selfish and keep him forever and loving him so much that I wanted him to be free from pain. And that is how I felt not what the magazines or newspapers will have you believe. Not 'guilty' per se but TORN in half.
Of course then Dylan did his little miracle and showed signs of fighting back, and test results contradicted everything any doctor could imagine. But our little superhero never did read the textbooks! Slowly but surely we got him back and I am thankful every single day. But I am also anxious every single day, and these memories definitely increase that ten fold.
I know of other Histio families currently going through the ICU ventilator / life support hell this very moment and I feel as if I am right there with them sometimes, feeling their pain and definitely shedding a tear for them. I only hope that you get the outcome we did. Histio isn't fair. Cancer isn't fair. Non of these illnesses that take precious lives are fair let's face it..
To be 100% truthful, life isn't fair but it can be wonderful too sometimes so live in every moment and cherish the good and the bad days, as time is fleeting.. <3
The date that Dylan collapsed at Little Nippers came and went with only a little reflection and anxiety from us.. but this week is the big one. Of all the times we've almost lost Dylan the events of this week are cut the deepest. [It also doesn't help that Dylan's story is about to run in the media again on Tuesday and yet again it focuses on me and my supposed guilt and generally makes me out to be a terrible mother but I digress. Please excuse my terrible writing this evening!]
Yesterday was the day he stopped breathing on the ward and frightened half the staff, patients and families. Today was the day he had his MRI and CT and we hoped he was stable enough to be extubated fairly swiftly but of course then he just got sicker and sicker. I remember the tension pneumothorax from the ventilator and him going grey, the rapid blood transfusion that instead of being dripped in slowly over a few hours was literally forced in as fast as possible by a nurse squeezing the bag. I remember the further tension pneumothorax that almost sent him into cardiac arrest.. one of the consultants stuck a needle in him before the X-ray even arrived as he was literally going on us. I remember being hysterical, not wanting to leave him but not wanting to watch as they pumped adrenaline into him and prepped him for more chest drains. I remember seeing the oxygen level come up from 30% to 80% and not feeling relieved because I sensed it was going to keep getting worse which it did.
I remember feeling utterly defeated on the 25th and then completely in denial on the morning of the 26th. Even though I saw it coming and wished his suffering to end I didn't want to loose him. I was torn between wanting to be selfish and keep him forever and loving him so much that I wanted him to be free from pain. And that is how I felt not what the magazines or newspapers will have you believe. Not 'guilty' per se but TORN in half.
Of course then Dylan did his little miracle and showed signs of fighting back, and test results contradicted everything any doctor could imagine. But our little superhero never did read the textbooks! Slowly but surely we got him back and I am thankful every single day. But I am also anxious every single day, and these memories definitely increase that ten fold.
I know of other Histio families currently going through the ICU ventilator / life support hell this very moment and I feel as if I am right there with them sometimes, feeling their pain and definitely shedding a tear for them. I only hope that you get the outcome we did. Histio isn't fair. Cancer isn't fair. Non of these illnesses that take precious lives are fair let's face it..
To be 100% truthful, life isn't fair but it can be wonderful too sometimes so live in every moment and cherish the good and the bad days, as time is fleeting.. <3
Subscribe to:
Posts (Atom)