Although we knew it wasn’t over, we thought now that Scooby was out of hospital having left part of himself to be experimented on in various hospitals around the country, we would soon hear some news of what was to happen next.
In the meantime we had no idea when to expect our next big event – the birth of our fifth baby. I was home but still no use to the family and in great pain again trying to get around in our three storey house. Thanks to an amazingly understanding consultant at Lancaster, who saw how bad the state of my pelvis was, and heard our plight about Scooby, I was taken in five days after coming back from Manchester, and on 25th February 2010 our baby girl was born J
Up until this point, the doctors had been reluctant to intervene with any treatments as there was still no diagnosis, so they wanted to see what the development of the actual symptoms were, rather than masking them with medicines. But now he was seriously ill and they had to start to intervene. He was put on a nose tube to be fed, and started on a very high dose of steroids. They could see an immediate improvement, and so after a couple of days were able to release him back home, armed with masses of medical equipment. It was the end of March meaning he had finished his second month-long hospital stay of the year.
His progress was incredible and after just ten days he was able to come off the nose tube. The steroids gave him a massive appetite so he put weight on immediately and was soon heavier than he had ever been, to our amazement. The only glitch was at the end of April, when everything seemed to be going well, he suddenly had another seizure – an active one this time, with shaking and jerking, and it needed medical intervention to stop.
We were pretty taken aback by this, but doctors reassured us that children often did have single episodes of seizures after a lot of internal changes and medical stress, so it was too soon to know how significant it was. It reminded us though that Scooby still needed a lot of care even if he was looking healthy on the outside.
He was able to go back to school for most of the Summer term, which was brilliant. Thankfully Scooby has always loved school and learning, and so he threw himself back into it. He probably missed about one day a week through various appointments in Lancaster and Manchester hospitals, but the rest of the time he seemed to be doing so well that his teachers were really pleased. He got a good report at the end of June from the hospital, and scans showed an improvement in his lungs, although the always hard-to-read MRI was unsure about changes in the brain.
All the time, Scooby was gradually being weaned off his steroids. Although they have done amazing things in him, they have massive side effects and are only supposed to be a temporary solution to a problem. We were satisfied that they had given his body the boost it had needed to fight whatever was going on in there and things seemed to be on the mend.
To be continued (unfortunately).....