This weeks "Bee"-ography is about Bee ^Joshua^. It was written by his mom, ^Diane^. There is a special addition about ^Diane^ written by Bee Chrissy's mom, Angela.
January 22, 1999-March 2, 2005
Joshua has had several problems since he came to us. The first being in March 99. He started continually crying and didn't sleep for three days and nights. I rang the hospital to see his consultant who in turn referred us to another hospital. Once there it was determined that his head size had increased rapidly. The surgeon came to see us and said they would take him to theatre to fit a shunt to help drain his CSF. This to me was like someone speaking a foreign language. All I knew was he was going to have an operation. So it was frantic trying to find out all about shunts, and CSF. Then the surgeon came back and said he was not going to operate but aspirate the fluid from his head. Which they did with good result. Since then Joshua's head has grown in proportion to his body and me monitor the growth very closely.
At this time Joshua stopped sucking so would not take his feeds, so he had his first NG tube which he tolerated pretty well. Alfie was also diagnosed with Diabetes Insipidus at this time and given DDAVP. On the 14th of August 99 Joshua woke up quite happy for Joshua. We noticed at lunch time that he had cut his top front tooth. Then around 4 o'clock that afternoon he started having seizures, one after the other. We took him to the hospital where they tried four different medications before the seizures stopped. By this time it was after midnight. The nurse on duty told us to go home and have a rest and collect our things as Joshua would probably sleep right through the night. We had only been home a couple of hours when we received a call saying the seizures had restarted and the drug they had given him (Phenytoin) could cause cardiac arrest so not to be alarmed when we got back to the ward as he was on a heart monitor. We set off straight back to the hospital and were told on arrival Joshua did not respond to the Phenytoin and was in PICU. When we arrived at PICU he had wires and drips coming out from all over and had been given Phenobarbitone. (Thankfully the seizures were now under control.) We were then transferred back on to the ward but Joshua restarted having seizures again. Back to PICU. After 3 days we were back on the ward and allowed to come home after 3 weeks. We had another stay in hospital in September with seizures. They changed his medication and since then we have not had any real problem with seizures. Joshua had his Gastrostomy in November 99. The surgeon came to see us and told us to expect Joshua to go to PICU after his operation. Owing to his condition he may take longer to come round and would start having seizures. We would be in hospital at least a week to 10 days. Joshua went to theartre at 9:30 am on Friday 12 November. He was back on the ward by 10:15 am with no problems. We came home on Monday 15th November as he had done so well. We have only had one slight infection around his gastrostomy site.
[This story was originally written in 2000]