Week 1

Intensive care - having been here with James just 10 months ago I think this was the part we were dreading most. All of those tubes, wires, pumps and alarm noises !

 

This time we were more aware of what to expect so it wasn't such a huge shock to see James on a ventilator with wires just littering his body. What was different, however was the fact that due to swelling of the new bowel the surgeons were unable to stich up his abdomen so it was left with just a see through psylastic dressing covering the wound - not a pretty sight!

 

James had to be kept sedated and paralysed so that he could go back to theatre to stich up his abdomen once the bowel had reduced in size. Despite the nurses constantly telling us to go and rest while he slept it was very difficult to leave his side. The mortality rate with this operation is so high, and we were constantly being reminded that the next days were critical. We would never have forgiven ourselves had we not been with him and something happened.

 

So we did shifts, one looking after Lauren, who was a little unsettled at being taken out of her home and spending her nights in different places; and one just sitting with James, holding his hand and praying he would pull through.

 

Some of the same problems were encountered as at Alder Hey ICU, in particular his heart rate plunging dangerously low whenever his tube was aspirated. However the pain team were at hand and ready with a strategy to prevent the dreadful problems we had encountered when James was weaned off morphine last year.

 

There was the usual process of ward rounds with teams of medics, surgeons and nurses pouring over his test results; physiotherapists; ultrasound scans and blood tests etc

 

Once again we felt nothing but awe and admiration for the intensive care nurses. They work such long, intense hours in an environment which feels suffocating. The dreadful things they witness on a day to day basis is heartbreaking, and the care they show and genuinely feel is exceptional. One lovely German nurse confided that though she is composed and professional throughout the working day, she is often reduced to tears on her journey home. Seeing what dreadful things can and do happen to babies and children makes us realise just what a blessing and miracle it is every time a baby is born healthy.

                         

As James' new bowel started to move, we were really excited to see a dirty nappy ! This may sound odd, but when your child has been unable to dirty his nappy for 9 months it seemed like a miracle. We knew this would be short lived though, as James would have a new stoma.

 

On Thursday evening James was taken back to theatre where he had his abdomen stitched up and his new stoma was formed. He will keep his stoma for approx. 18 months since the only way of identifying bowel rejection is through the twice weekly stoma biopsies.

 

All stitched up, the medics were able to start reducing his paralysis on the Friday. His hands were bandaged up to prevent him from removing his ventilator himself on waking, which he did do last year at Alder Hey. However when he did wake it became obvious just how much James has matured in the last year. He signed that he wanted the bandages removed so Jane reasoned with him that she would do this if he promised not to touch any of the tubes. He kept his promise and despite waking once again to a terrifying scenario James lay still and grasped his parents hands. Not only had James grown up, this time he undertood what a hospital was.

 

On Saturday James' ventilator was removed as he was doing all his own breathing, and he was subsequently taken down to the High Dependency Unit on Ward 8.

 

The next few days, James was very withdrawn, did not speak and was absolutely terrifed whenever anybody except his parents approached him. He did not sleep, and neither did we. James wanted whichever parent was on night duty to hold his hand or cuddle him all night, whilst a seemingly endless schedule of antibiotics and immuno suppressent drugs was pushed down his nasal tubes.

 

His first stoma biopsy took place on Monday morning. We had been warned that most children hate this as it is quite distressing to see a long sharp implement inserted into your body. However it is painless as the nerves are removed when the stoma is formed. James didn't like his bag being taken off his new stoma, but Jane distracted him whilst the biopsy took place so he barely noticed.

 

Unfortunately on Monday evening Jane and Lauren had to return home to Cheshire since breaking out in a cold. Due to the intense immuno-suppressant regime that James has commenced, and will be on for life, his immune system has effectively been stripped away from him in an effort to prevent rejection. Viruses that to most people are harmless eg common colds could be a killer to James, so we will have to take special care throughout his life to minimise exposure risk. Leaving Birmingham has been very hard for Jane but it was the only sensible thing for her to do.    

See Week 2 Update