Meningitis strikes - March 2008

Toby's 1st Birthday - 2nd March 2008

I will briefly summarise what has happened to Toby over the the last 5 months. Up until the Easter weekend Toby was doing all the normal things that growing babies do. Toby celebrated his 1st birthday on 2nd March with his friends Nathan and Harrison. Grandma gave Toby a walker for his birthday and he was quickly up and about, racing straight-legged across the room until he reached the wall where Tobes would stop and wait for someone to turn him around. He would laugh whilst you lifted him and the walker around and he would set off again for the other side of the room.

Over the Easter weekend Toby developed a cold and by the Monday he was clearly very poorly. He and I were eventually ambulanced into hospital but delays and oversight in diagnosing the illness properly meant that he was not given the right treatment and early on Wednesday morning Toby starting fitting and suffered respiratory arrest. Toby was transferred to paediatric intensive care (PICU) where the diagnosis of pneumococcal meningoencephalitis was made. Toby spent the next 11 days sedated and on a ventilator. We sat by his side and could do nothing but wait and hope that he knew we were there. When the sedation was lifted and the ventilator removed, Toby showed no sign of knowing us or recognising anything around him. He was moved from the intensive care ward to the children's medical unit two days after he was extubated, some two weeks after he was first hospitalised.

Whilst Toby was a patient of the PICU I had stayed in a small room with an ensuite shower room provided for parents of children in the intensive care unit. On the children's medical unit parents slept on fold-up beds next to the cot or bed of their child and used the toilets and showers used by all the children on the ward. We were very fortunate to be given a small single room for Toby which gave us a little privacy and we lived in this turquoise room for the next 16 weeks and 5 days.

Following our transfer to the Children's Ward on 7th April Toby was extremely distressed and cried for hours each day. He would sleep for only 2 to 3 hours at a time and he appeared to be in constant pain. We tried our hardest to comfort him to no avail. Physiotherapists scheduled twice daily sessions with Toby to start his rehabilitation but Toby's physical tone was so high and he was so rigid and extended that they struggled to do even the most basic stretches with him. Occupational Therapists and Speech and Language Therapists had no role to play with him as he was not able to interact with anyone. At this stage we had no idea whether he was aware of anyone around him - he showed no real signs of recognising me, Martin or Mat and we were not sure if he could even see or hear us. The question of his capacity to hear was answered by a series of tests at the end of May which revealed he had profound hearing loss in both ears. We held out hope for his visual abilities but these were dashed by tests in July that have shown him to have no sight at all in either eye.

During his time on the children's ward Toby developed a number of illnesses - a hospital acquired infection in the form of diarrhoea and vomiting and two urinary tract infections. The second of these infections occurred in early June and was particularly severe. Toby deteriorated within just a few hours after showing the first signs of illness and the medical team were extremely concerned about him. In the search to pinpoint the source of the infection, a CT scan of his head was carried out. This scan revealed hydrocephalus - excess fluid around Toby's brain. Questions were raised but never adequately answered as to whether Toby had raised intra-cranial pressure and/or atrophy of the brain matter due to the damage caused by the meningitis. The neurosurgeons became involved and a temporary reservoir was inserted in order that the cerebrospinal fluid could be drawn off manually by the medics to reduce the pressure within Toby's head.

We held out hope that this procedure might reduce Toby's distress and iritability but the initial period in which fluid was drawn off twice a week did not seem to result in any significant difference. Before inserting a more permanent shunt to drain the excess fluid into Toby's abdomen, we needed to be more certain that this procedure would be of benefit as it carries with it risk of infection and blockage which could cause further problems for Toby. The frequency of drawing off fluid was increased to daily and we rated Toby's irritability and behaviour during a period of fluid draining compared to a short period of no drain. This systematic rating of specified behaviours and actions resulted in it becoming clear that Toby was more relaxed, slept better and was able to engage in physio more productively during the period when the reservoir was drained each day. Thus sugery to insert the shunt took place on 22nd July and it resulted in huge changes in Toby's tone and his overall manner. Overnight Toby was able to straighten his body out and turn his head from side to side. Within days his sleeping pattern had changed and he slept for up to 6 hours each night - a huge improvement on the previous 3.5 months although he was still waking in the early hours of the morning for 3 hours before dropping back off to sleep around 5am. When awake Toby was not distressed as he had been for the previous 3 months.

Toby was finally discharged home on 1st August. We are a family under one roof again and we are now learning how to live this new life with a different Toby. He cannot see or hear, eat or move his body. Toby has yet to give us some sign that he knows we are his mummy and daddy and big brother Mat, but he is still our Toby and we love him. We decided to keep this diary in order to record his progress - Martin, Mat and I, together with close relatives and dear friends, have been through some very dark days over the last 18.5 weeks and I felt the need to document positive change in order that we can see the good things that happen and give ourselves some protection from the certain despair and difficulties that lie ahead.

Lisa Butler

11 August 2008