2004

In January Ben started attending the 'Starlight Group' at our local Child Development Centre (CDC).
This is a special needs nursery which incorporates physiotherapy and speech and language therapy into the routine. Ben attends the Starlight group 2 days a week and attends his other Nursery during the other days. With the introduction of the Starlight group Portage pulled out as it was felt that the two were overlapping. It was sad to see Debbie go but it felt as though we were moving forward.

Whilst attending the Starlight Group, Claire the physio has introduced a miniwalker walking frame which has enabled Ben to walk. This has worked well and we now have one for use at home.

Over the last year we have had many admissions to hospial with Ben becoming dehydrated due to his diabetes insipidus. These admissions have averaged at around one per month, and each time Ben is admitted the Dr's find it increasingly difficult to put a needle into Ben's arm in order to get the fluids which he so desperately needs.
The causes of the dehydation are many sometimes it is because Ben refuses to drink, other times it may be that he has a cold or a sore throat and therefore it hurts to drink.

Dr Crowne, the Endocrinologist suggested back in November of last year that Ben could benefit from having a Gastrostomy ot PEG inserted into his stomach. This is a small tube which is inserted under a General Anaesthetic, into the stomach and enables fluid and food suplements to be given directly into the stomach through the tube. In Ben's case it would be largely used for fluids.

Our initial reaction to this was 'NO WAY, NOT OUR LITTLE BOY!', however after our monthly admissions continued and on some occassions became even more regular we decided that the PEG was probably the best option. I wrote to Dr Crowne explaining that Ben was missing a great deal of his sessions at the starlight group due to ill health and that we were still having frequent admissions to hospital. I also explained that because of the difficulty in finding a vein in which to insert a needle for giving intravenous fluids, Ben became increasingly distressed during the proceedure and sometimes Dr's would have 3 or 4 attempts before giving up.
This then meant that Ben would have to be woken hourly to have a drink throughout the night which is not a pleasant experience for anyone especially a 3 year old child who doesn't understand.

In August 2004 Ben was admitted to the Bristol Childrens Hospital, tho have his PEG inserted. The proceedure only took 45 minutes and although Ben had some pain immediately after the surgery he soon settled down with the use of pain killers. The operation took place on the Tuesday and after we were shown how to look after the PEG at home, we were discharged on the Thursday.
Ben has taken very little notice of the PEG, and does not mind when we have to put fluids through it. We have to Flush 50mls of boiled cooled water down it once or twice daily depending on how much we need to use it for topping up Ben's fluid intake.

Since Ben has had the PEG inserted he seems to be eating and drinking well, I suspect that this is because the pressure is off and we are not constantly thrusting a drink into his mouth in order to ensure that he drinks 1 Litre of fluid before he goes to bed. Ben can now drink when he wants to and what he hasn't had during the day he can have at night when he is asleep through his PEG.

It is still early days and we have yet to see how long we can go without a hospital admission, but I feel hopeful and I certainly feel as though the pressure is off and at last we can enjoy Ben and he can continue to learn without interuption due to hospital admissions.

PEG - PERCUTANEOUS ENDOSCOPIC GASTROSTOMY

2005

Ben had been having strange 'head nodding' episodes over a long period of time, these were once investigated but nothing abnormal was detected. More recently these episodes have been occuring more frequently and have been more severe, eventually leading to Ben falling forward and hitting his head very hard on the floor, causing him to become upset and a lump to appear on his forehead.

As a result of this injury Ben was admitted to hospital for obsrevation and investigation, whilst being observed it was noted that Ben had 13 'head drops' in one morning. The Consultant paediatrician decided to refer Ben to neurology for an EEG (elctroencephalogram), to take place that day.

This investigation involves electrodes being attached to Ben's scalp, to record electrical activity produced by the brain (Blackwells dictionary of nursing, 1994). The EEG lasted for 2 hours and during this time Ben had no episodes. When Ben returned to the ward 3 'head drops' were noted one after the other. The consultant decided then that Ben should have the EEG done again but this time it should be done on the ward and Ben should be filmed during the EEG, this is known as telemery.

Ben was filmed during the EEG for 4 hours, during this time he was an angel, he sat there drinking his juice and cooing happily, during this time he also had several 'head drops' which were noted.

The following day the results of the Telemetry showed that these 'head drops' were seizures and Ben was diagnosed with Epilepsy, which they think is caused by Ben's brain abnormalities which are now being referred to as Holoprosencephaly. This basically means that there is a series of brain malformations in which there is incomplete development of the cerebrum (www.cafamily.org.uk, 2004).

Ben has been commenced on a low dose of medication to try to control these seizures. The medication will be increased once he has been taking it for a month and Ben will have an outpatients appointment to monitor his progress during this time.

What has struck me through all of this is that no matter how hard it is for both Andy and myself to keep being bombarded with new diagnoses, Ben remains happy and full of smiles throughout, even when he is in hospital. This gives me the drive and determination to fight for Ben whether it is for support, specialist care or equipment, it is essential for Ben's continued development that I persevere, no matter how hard it is for me at times, in order that he can remain the happy, determined little boy that he has become.