We travelled down on the Friday and stayed in a Travelodge for an early start on the Saturday. Going away takes some coordination as we need to pack all of the medication, oxygen tanks, nebulisers, milk pump, chargers as well as the usual stuff like cloths. But we are pretty good at throwing everything into the back of the car and heading off.
Joshua and Sally love staying in hotels. Even though we arrived late, at 8pm, they soon woke up, with Sally trying ever switch in the room, twisting the bedside lights, trying to get into the bath room and generally being a monster. Joshua checks out the TV, the bed and then wants food. He's becoming a teenager. Sally and Joshua then marched off to the bar and restaurant as if they owned it. Joshua even asked for his own lemonade and paid for it, whilst Sally spotted a chequered baby seat, she has a thing about chequered cloth. The staff were excellent and really accommodating with the children.
Next day we all enjoyed a wet day at Legoland. It was manic but with the exit pass, again thanks to disabled children, we managed to go on all the rides we wanted. Joshua must have ate at every café with the excuse we were hiding from the rain. Sally went on the train twice and squealed both times, making a little boy in front of her jump. We risked hyperthermia by staying for the firework display, which was spectacular. With it being busy the crowds were very large. Large crowds generally equal less tolerance which showed itself with a man deciding that the space in front of Sally and Joshua was a good spot to see the fireworks, even though he had obviously blocked their view. I confronted him on this, with him grumbling that we all wanted to see them and held his ground. I announced very loudly that "My two disabled children can no longer see the fireworks thanks to him." Amazingly he was shamed into moving. As a parent with special needs I am getting less patient with rude and disrespectful behaviour.
The children returned to the hotel shattered but very happy, they fell asleep very quickly and didn't wake up until 8am the next day.
Back to school on the Monday with Joshua reluctant to go, he's finding secondary school a little harder than primary school. Sally just loves it so happily wheeled in. Today was a big day for me, the first time I was to give blood. I thought the rest of my family have taken blood so someone had better give some back. Apart from the needle being big it was a pretty painless procedure with the benefit of some nice biscuits and a lie down for 30 minutes during the day, fantastic.
Joshua had his appointment with the foot doctor this week with the conclusion that his knee didn't need any work but they would like to put flat foot implants into his feet. Great, I can just feel the stress building up for both Joshua and us. This would mean Joshua being in plaster from between three to six weeks but long term would help his walking, back, hips, etc... Something we need to think about.
The next week begins the health issues. Sally had a slight temperature at school followed by a convulsion when she arrived home. Tracy took her to hospital with the diagnosis that she had aspirated on catarrah. This meant she didn't need to stay in, which was very fortunate as I was getting the 7:14am train to London the next day, hosting a meeting for fourteen people. Balancing work commitments and home life is always a juggle for any parent but throw into the mix unexpected health problems and you're suddenly juggling about ten balls.
Sally stayed off school the rest of the week whilst she slowly recovered, becoming less wheezy each day and becoming progressively destructive each day, back to normal! By Friday Tracy took Sally to school so she could trash there instead of home. It was Children In Need day so Tracy created a very colourful T-Shirt for Sally with Pudsey in bright yellow. Sally had a great day. Joshua enjoyed watching the show in the evening whilst I let my stomach settle down after eating at least a dozen cakes which were on sale at work to raise money. What a great excuse for cakes.
Another nice aspect of having special needs children is meeting and bringing out the good side of people. Our neighbours, Adele and Dave, who have helped on a number of occasions, had noticed that Tracy's Dad had met Joshua from the school taxi and Tracy's car was missing. Putting one and one together they worked out Sally must be in hospital. At six o'clock there was a knock on the door with an offer of help to look after Joshua if there was anything wrong. She had noticed Tracy missing and Tracy's Dad must have been looking after Joshua and may want a rest. We were really touched by this impromptu help. Adele and Dave have helped unconditionally so much in the past and are very convenient being only four doors down the street.
Tracy had a couple of nights out planned with her friends on the Friday and Saturday, which she went on, even though she was shattered and still recovering from her cold. Tracy has a really nice group of friends who all support each other and all have special needs children, so they can empathise with each other. We have a really good circle of friends who always support us when we need help, bringing food to hospital as they know we can't leave the ward, baby sitting or generally just giving us an ear to moan at. A few years ago when Sally was in hospital most weeks some friends took us to a pub with the children, sat us down and then said, ‘here's some money get yourself a pub lunch, we are taking the children out and will be back in two hours'. This was the best Christmas present we have ever had as they recognised we just needed a break.
Now the week of hell starts. The plan was simple, the children would be at school all week, Tracy would return to work Monday and I would work away Tuesday night after leaving at 5:30am Tuesday morning. How wrong could I be....
On Saturday night Joshua woke up at 11pm being sick. He didn't have a temperature so I put it down to over eating. Sickness is becoming a monthly occurrence since his stomach operation back in February. He went back to sleep after changing all the bedding, mopping the floor etc...
Sunday morning Joshua wakes up looking very flushed, I took his temperature which read 40.0C, pretty high by anyone's standards. I think we've hit 40.5C with Sally in the past so he was near to the top of the league table. The sickness began, lasting about two hours. There is always humour in every situation and Joshua never lets us down. After about an hour Joshua starts saying ‘sausages, sausages'. He had planned on going to his granddads that morning for bacon butties so his mind had obviously drifted to his favourite topic of food, when his mind realised his stomach was getting empty. Tracy and I just laughed and tried to tell him that maybe it wasn't such a good idea at the moment. His temperature dropped to 38.5C, but no lower, for the next few hours so decided to take him to the out of hours doctors. After a quick run through of his history, very predictably, they sent him to hospital.
During the morning Sally was very jealous of Joshua getting all of the attention and kept crawling onto mine or Tracy's knee, lying next to Joshua and pulling the sheet from him as he lay on the sofa. She was really funny as she is usually ill. At one point she looked like she was giving Joshua a nice cuddle until she started hitting his head like a drum. Joshua just looked at us as if to say "what is she doing?"
Tracy took Joshua to hospital where we knew he would be staying in. Now, the original plans for the week were about to go up the wall.
I decided to stayed with Joshua in hospital that night as I knew Tracy was really tired and was still recovering from her cold, so a sleepless night ensued for me with the doctor arriving at 1am to have a look at Joshua. It was manic at the hospital so a long delay in getting seen. The doctor felt it was viral as there was not signs of an infection. The next day Joshua was equally as ill so after some blood tests they decided to start IV antibiotics with a view it may be meningitis. This is a common diagnosis at this stage as he was showing some symptoms such as dislike of lights, various spots over his body. It's wasn't but treatment started just in case.
We had also arranged two other appointments on the Monday, one was a meeting with the wheelchair service at 9:30 and the other with house adaptations at 4pm. The physiotherapist has chased up the wheelchair service, probably getting in trouble again, but fantastic help to us. This led to the morning appointment, which I didn't want to miss. So, Tracy rushed to the hospital Monday morning with Sally where we did a quick change over and I headed with Sally to the appointment. I started the meeting with the words "I would just like you to know that we are absolutely disgusted with the service we have received from this department and the absolute lack of a suitable wheelchair for Sally which does not meet her or her carers needs in any way." This triggered a string of apologies and an immediate arrangement of finding a suitable wheelchair.
Within the next hour the charity funded chair which was on order had been taken over by the wheelchair service, a phone call to the charity to apologise for letting us down and expecting a charity to fund a chair, a phone call to the physiotherapist to let them know what was going on and a phone call to the wheelchair supplier to arrange the delivery of the chair. I must say a good result but a shame it has taken this long and a confrontation to get a chair which actually suits Sally. They have also accepted my criticism of the supplier chair and will pass my comments to the selection panel in light of the dangerous usability points I have raised.
Later in the afternoon we also had a visit from the adaptations department who were excellent and went through the house giving us the options on what we could do to make our life easier. They were horrified that I carried Sally upstairs, but then again I had never thought there were any other options. We can now consider an entry ramp, floor lift, handles, bathroom changes etc...
I still planned to go to London the next day but not to stay over. Again, logistics would be complex but it could be done. I rang Francis House to ask if Sally and I could stay over Monday night, with me leaving at 5:15am, which meant they could feed her and give her the nebuliser before her taxi arrived for school. Then, after school we would use a respite carer and Sally's granddad to look after her before I arrived home at 9pm. The Francis House stay went very well and great to see the staff, all being very supportive with Joshua being in hospital. I went off to London and Sally headed off to school all fed and drugged up, in a positive way!
Then it all goes wrong. Sally's school rang Tracy at 10am to say Sally had a temperature but they would do their best to keep her in school and manage her temperature. She came home to her respite carer, Heather, but decided to go grey, have a temperature and become pretty unwell. Tracy, who was with Joshua in hospital sorted out an ambulance for Sally who then joined Joshua in the adjacent cubical. Heather did a fantastic job and eventually went home at 7pm probably a little shaken and in need of a drink. Tracy would also have loved a drink but unfortunately she was now in hospital with both children whilst I was on a plane flying back to Manchester.
I arrived into Manchester, picked my car up, rushed home, packed Sally's medication, milk and clothes before heading to the hospital. As soon as I arrived Sally had the aforementioned convulsion. I had also become progressively ill during the day and now had a high temperature so drove home to collapse whilst Tracy now had two children in hospital by herself.
And that's where we are now, Joshua is coming home and we have some respite for Sally between 11pm and 7am so Tracy can sleep from 12 to 6am. Until next time.....