When your child is on critical care you need to be there
My son Daniel has quadriplegia cerebral palsy. Unfortunately his birth and welcome to the world was far from straightforward, but the fact he’s still with us is pretty special.
After a normal pregnancy, my partner Jodie’s labour was complicated and Daniel needed to be resuscitated on delivery. He suffered brain damage and we were told to prepare for the worst. We had him christened, we said our goodbyes, but our little braveheart Daniel decided that he was here to stay.
Quadriplegia cerebral palsy means that Daniel doesn’t have control over his own body. He has complex needs and has spent most of his life in and out of hospital as his doctors work out the best way to care for his needs.
Most recently, Daniel needed to be admitted into Sheffield Children’s Hospital for surgery on his hips and legs to release tension in his muscles and ligaments and make his daily life more comfortable in the longer-term. We live in Doncaster with Daniel’s big brother Luke, about half an hour or so away from Sheffield and we planned to take it in turns to stay by Daniel’s bedside while he recovered from his surgery. Our little man Daniel had other plans however.
The surgery went well but it triggered his complex epilepsy. One night of recovery in critical care turned into a life or death situation and suddenly an hour’s commute each day wasn’t an option.
That’s when we found The Sick Children’s Trust. We were introduced to the staff at Magnolia House, which is a free ‘Home from Home’ based at Sheffield Children’s Hospital for families with children being treated on critical care. We could stay together, for free, while Daniel was being treated. What’s more, you literally walk through a couple of doors from the house and you are immediately on the ward itself.
Poor Jodie had pulled her back in all the upheaval and was suffering with a trapped nerve, Luke was also beside himself with worry about his little brother, and we were desperately trying to hold it together while Daniel’s condition went up and down. Being in Magnolia House made life so much easier.
It was simply unbelievable to know we had a place we could stay together, where we could both be just minutes from Daniel’s side and where his brother Luke could come too.
When your child is on critical care you need to be there. Daniel’s epilepsy is triggered by pain and fatigue and his post-surgery recovery triggered an acute attack. He started having seizures, he needed oxygen, the post-surgical catheter in his groin was causing bruising and pain. His tests showed markers for an infection. Our boy was heavily sedated, with ketamine and morphine to try and control his pain, and his head was covered by a CPAP mask to push oxygen through his airway. Daniel was fighting with all of his strength but only time would tell.
The stress of the hospital, watching Daniel like a hawk every minute we were by his side, was a weight on all of us. But Magnolia House meant we could have a little break. We could have a shower, make a meal, lie on the beds and close our eyes for a minute, safe in the knowledge the ward would call us if Daniel’s condition changed. In fact, in those first few days, a couple of times in the early hours the phone by our beds rang and we rushed to be at Daniel’s side in minutes, as the doctors struggled to control his seizures and stabilise his condition.
We also had time to reflect and once again ask the questions such as why does our little boy have to go through all this? It really, really isn’t fair. All he has done from day one of his life is face battles that no one should ever have to face never mind a child. We know he’s done amazingly and defied all odds but it breaks our heart to see him struggle.
Being in critical care at Sheffield Children’s Hospital also triggered memories of his early days in intensive care shortly after birth. Firstly the whole critical care environment and all the machines, the desperate fight to keep them alive, and then even down to suddenly our life being turned upside down once again and living away from home and setting up camp elsewhere.
The staff at Magnolia House were a support and at least we had the comfort of being together as a family. We weren’t split up, working in shifts to care for Daniel and Luke. We were together, we were a team and we were there to make sure Daniel had the love and care we knew he needed to pull through.
As his condition improved, we saw glimpses of our boy return. His brother Luke, who was so upset at the thought of what Daniel was going through, was able to visit him on the ward. Daniel lights up when his brother is in the room, the two of them are best pals. He’s like a different child when his brother is with him and that was so special for Jodie and I to watch.
After a week in critical care, Daniel was finally stable and well enough to be transferred to a ward. We were both exhausted mentally and physically, but just so relieved to know he’d fought through the worst and was showing signs of improvement. At that point we were able to say goodbye to the team at The Sick Children’s Trust and Magnolia House, so another family with a child on critical care could benefit from their support.
We need to say a really big thank you to The Sick Children’s Trust. They are an amazing charity who make such a difference to families like ours. The facilities and the staff are so good, it really is perfect in light of what we needed as a family.
Thankfully Daniel is now back home and life has gone back, somewhat, to normal, whatever that means. Jodie and I take turns to care for him during the night, his brother Luke entertains him after school and Daniel continues to inspire.
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