Sunday

Today has been calmer unlike yesterday which was very distressing for us all. We remain in salisbury with 1-1 care as the PICU in Southampton is full. 

Samuel has many pumps and bells. He has infusions of morphine, potassium, antibiotics, paracetamol, and TPN  running. He is unable to maintain his oxygen level without facial oxygen as he has pleural infusion (fluid on his lungs), he also has a cardio infusion (fluid on his heart), both a result of prolonged illness and restriction to his mobility and the pressure that the abdominal obstruction placed on his organs. Sams NGT remains on free drainage to empty his stomach as he still has a parylitic  ilieos.  

A cannula has been placed in his foot as he has run out of veins in his arms. Sam finds all the needles and daily blood tests so distressing. He has had an air bed since Thursday to help prevent pressure sores. 

Sams abdomen looks less distended which is reassuring, However the 2 large dressings covering his wounds represent the trauma he has experienced. 

Sam is very stoic and hides his pain very well. It has been quite a challenge to control his pain today. Movement and even touch is quite distressing for him. My instinct is to want to hold his hand, or stroke his hair or cheek but he could not cope with this this morning. This compounds my feeling of guilt wondering how I ever let this happen to him. Is he rejecting me as he does not trust me to keep him safe. 

My poor baby has been trough so much. It's unbelievable that over two weeks ago he became ill with what we thought was a simple tummy bug. What is harder still, is that this time last sunday I was wondering how we were going to manage splitting family life between home and the hospital, for what i thought would be just a few days, and yet sams recovery has been reset even further now compared to where we thought we were last Sunday. 

Isaac known as the 'shower baby!' To the nurses on Sarum ward (because he has slept in the cubical shower since Sams admission) has moved into the parents flat with me on Sarum ward, we have a little space to escape the bells and beeps, yet be close as we can to Sam. I do feel guilt when I leave sams bed side, but being there almost 24 hrs a day for the last two weeks has been very intense. 

We are so grateful for all the messages of encouragement and love, meals, cake, and offers of help that we are receiving. We are sorry that we have not been able to reply to everyone individually, our reception here at the hospital is poor and our priority is with our family at the moment. To learn that Sam was prayed for by 4 different churches today is really special to us. 

We feel very blessed at this traumatic time, we have so many people helping us to keep our heads above the water. Here begins our third difficult week ... and I know with everyone's help we should get through this tricky time. 

Thank you 

Love from 

Nigel Joy 

Sam Ben Luke Josh Isaac

 XXxxxxx