One medical point I forgot to mention in the previous entry was the mal-rotation of Joshua's intestine early this year. We had a bit of a scare in February 2008 when Joshua was bent over double in pain with his stomach. He was unable to tell us the details but he just kept repeating ‘stomach hurt'. We ended up taking him to hospital where they gave him morphine for the pain.
Twenty-four hours later and having been transferred to another hospital he was operated on at 2am to correct the mal-rotation. This was having the effect of isolating part of his intestine, which if left untreated could have caused blood poisoning. Luckily everything went well but we have to be cautious just in case it happens again.
The hospital visit diagnosed him with severe constipation so nothing too serious to worry about. He was back home with some medicine by bedtime. What is stressful in this situation is that I was working away two hundred miles away for a night. There is nothing worse than being far away when you child is suffering.
By the Friday everyone was well and Sally was very excited, it was her 9th birthday. She ripped open her presents before school and squealed at the new rattles and noisy electronic toys she had received. We continue to stock up on every type of baby rattles and noisy flashy toys ever made, Sally's favourite toys. When Joshua and Sally arrived home Joshua was very excited about the birthday and insisted on making a birthday cake for Sally, with candles and all. Even though Sally can't eat the cake she loved the experience with Joshua singing a perfect rendition of ‘Happy Birthday'. Sally was able to nibble the icing.
Saturday was very manic. We held a ball pool party for Sally with all of her special needs class mates, family friends and anyone else we knew. It's nice to see the special needs children coming along as its rare to get a party invite in a special needs school. Sally enjoyed the party but was a little tired. She is due to start her three monthly antibiotics on Monday and she is ready for them. As we get closer to the three month mark you can tell the infection is growing as her colouring gets greyer, she gets wheezy easily and starts coughing up more mucus. To end the day we had an ABC Group session in the afternoon, which Tracy and I run. This is a support group for special needs children and their families. We meet every couple of weeks and have fun! Needless to say the children went to bed at 7pm very tired and happy.
We decided to go to Chester Zoo on the Sunday for Sally's birthday as both children love the animals and it is relatively easy for Sally as she can sit in her buggy. We also took Joshua's wheelchair as he was still recovering from the previous week. An exciting day with the highlight being the sky train with lots of squeals from Sally and growls from Joshua, we are our own mini zoo sometimes.
Monday is IV antibiotic start day. This will last 14 days and will mean Sally has six syringes every eight hours with a blood test every few days to make sure the medication levels are correct. So an uneventful insertion of the portacath needle at the hospital after school followed by the second batch of medicine at 11:30pm. However, during the night Sally had been scratching the portacath site, even though we had tried to wrap it with tape and cloths. This meant that as we injected the medicine it leaked. So, rang the hospital at 8am who said they didn't want to miss a dosage so can we bring her now. This routine of the portacath needle leaking happens every three days or so. Apparently, this isn't normal which we have come to see as normal for Sally. If we want Sally to comply then she won't.
The week wasn't to be smooth. On the Monday Sally also had her flu jab which caused her to have a high temperature, whilst at school on Wednesday. This meant Tracy had to pick her up, with Sally looking a little unwell, wheezy, grey and tired. We topped her up with Calpol gave her some nebulisers and by the Friday she was well again. We did get some respite at a council run respite house, which is great. But, they are not trained for the IV medication so we had to go along at 11:30pm and 8am the next morning to give Sally the medicine. Joshua is fine now and loves staying away from home, he would live in a hotel if he had the choice with a big restaurant serving food twenty four hours a day.
Some good news on the Wednesday. I received a phone call from Francis House, a charity respite centre, saying they had a cancellation for the weekend for both children, if we would like it. After thinking about it for about two seconds I agreed and arranged to take the children on Saturday afternoon, they would stay until the Monday morning. Tracy and I would stay the Sunday night so we could drive them both to school.
As we have to have the rough with the smooth Sally dislodged the portacath again on the Friday so ended up at hospital until 7pm Friday night. It was my birthday today and Sally has maintained the record of going or staying in hospital for seven out of her nine years on my birthday. Luckily this time it was routine and just needed the portacath putting back in. Joshua was very excited about my birthday and had helped his mum make a fantastic cheesecake with candles, thanks to Jamie Oliver and his new cook book! I also received a word perfect rendition of ‘Happy Birthday' from Joshua. He loves birthdays and wanted a party.
We don't tell Joshua what is going on too far into the future as he can get very anxious and will be sick due to nerves. Every Saturday for the past few months he has been sick just as we are about to get into the car, or even in the car. We tend to tell him we are going to the shops regardless of where we are going, once we arrive somewhere we declare ‘Oh look where we are, do you fancy going'. So, he wasn't aware of Francis House until we were five minutes away.
Once at Francis House the children love it, it is their very own six star hotel. Joshua watches and helps the kitchen staff, in both preparation and tasting food. Sally is in toy heaven with a room full of noisy rattles, electronic toys, music rooms, ball pools, disco lights and everything any child could ever want. Francis House staff are fantastic and very welcoming so the children didn't even notice Tracy and I sneak out. A much needed break from IV injections, nebulisers, milk preparation, nappies and running around stopping Sally and Joshua messing or hurting themselves.
The weekend was fantastic with a Sunday trip to the local beach for a windy walk for Tracy and a windsurfing blast for me. Even though it was only been twenty four hours since the children had been away our bodies were actually relaxed. We even lay in until 11am which is something I can't remember doing for a long long time. Sally pulled out the portacath on the Sunday, but no problem, the staff popped to the hospital for another one and put it in themselves. No work for us.
Back to the routine Monday, but touch wood, it's now Thursday and the portacath is still in. We've have to call into hospital tomorrow afternoon for a blood test to check medicine levels and pick up the next few days worth of medication. Tracy must have averaged two trips a day in the past week, this week has only been two so far...
It is no surprise that the wheelchair service have not been in contact regarding the urgent request for help. They told me they would be in contact within two weeks, which ran out last Friday! Good news though - a charity, Newlife, has agreed to fund a wheelchair buggy for Sally. The local council have ignored our requests and have only provided a wheelchair which couldn't have been made more unsuitable for Sally even if they had tried. At least we are getting something which will suit Sally.
Still no news on Sally's dental operation. She has now been passed to another hospital who has failed to contact us. We are now in the situation where we don't actually know who to ring and who is taking over this operation since one hospital wasn't comfortable in performing the operation due to Sally's chequered history.
It's now about to be school holidays with Tracy coping with both children as I have no holidays left to take.
The next couple of weeks will see the end of this round of IV medication, Joshua has an appointment for his knee, which we've been waiting for since last year and we are all off to Legoland for a weekend of high-speed rides!
- Find out about David and Tracy's ABC group at on the ABC family group website.