This is going to be one of those reverse stories where you find out the outcome and then work out how we managed to get there. ..
Firstly, Joshua has been in hospital since Sunday due to severe sickness and a very high temperature of 40.0C. It looks like some sort of virus but his white blood cell count was high along with his CRP level, 140+. Both measures confirm he has some sort of bug. He has had three days of IV antibiotics and fluids through an IV line. He is now on the mend and should be home a little later today.
Sally had a medium temperature at school on Tuesday and by the evening was in hospital with a high temp, wheezy and having a bad convulsion of 2 minutes 5 seconds of not breathing. That's a long one! She doesn't have what Joshua has but looks like she may have aspirated on something causing a blockage in her lungs. She hasn't recovered as quickly as usual and is still showing a varied temperature and is wheezy. The physiotherapist has given her chest a good work over and moved some gunk around, not a lot has come out though. I expect she will be in hospital for a couple more days. She is on some IV antibiotics just in case as her lungs have some crackles. (We have just found out she may have pneumonia, this does sound scary to the normal parent but Sally has had pneumonia dozens of times and generally describes the seriousness of the infection, again most of Sally's infections are serious.)
I stayed over with Joshua in hospital on the Sunday night as Tracy was shattered. Unfortunately from then on I gained tonsillitis with a high temperature so Tracy has held the sleeping rota at hospital. On the positive side we've been reunited with lots of the friendly nurses and other regular parent ‘sleepers'. Everyone has been walking past Tracy and laughing in sympathy as she flits between Joshua's and Sally's rooms to keep them both happy. Even though it has been a hard week, all nine years of struggling for help have finally come together. The hospital arranged for an extra member of staff to stay over Wednesday night and Abby from Dragonfly is staying over tonight. This is fantastic and was put in place back in May 2007, in case we ever had this situation.
Back in May 2007 after staying in hospital for over 170+ nights in the previous twelve months, with no overnight help, we finally kicked off after receiving little help from the social worker and struggling to get through the lack of sleep and disruption. A children in need meeting was organised, which the social worker tried to persuade us we did not need, and all the key professionals involved in Sally's and Joshua's care were invited. Both schools, Dragonfly, Rainbow Family Trust, physiotherapists, speech therapists and the hospital staff were all behind providing help and bullied the social services into providing money to help when we most needed it. It was a lot of effort from everyone involved but it has finally paid off.
The social worker eventually apologised and said she didn't realise the situation was that bad! I do understand that social workers are very understaffed but they shouldn't be given the keys to most of the respite resources if they don't have the time to understand your situation. We know a number of parents who have had lots of ridiculous arguments with social workers which has shown their complete lack of understanding of caring for special needs children. Okay rant over, and you can probably understand my previous comments now.
So lets step back a few weeks, when the world was a little calmer....
To continue from the previous blog, the portacath stayed in until the Saturday morning. I was giving Sally the 7am medicines and as I was injecting her, I noticed she was getting agitated with the portacath site. I thought she was just getting fed up so continued with the drugs. Oh dear, the portacath needle under her skin must have shifted as the drugs weren't going fully into the line but a bubble was forming under her skin of all the drugs I had injected. Trying not to panic I rang the hospital ward who calmed me down and said just bring her in and they will put in another needle, the leaked drugs would be fine and would soon dissipate into her skin. Tracy wasn't panicking as much as me and had seen it do this before - and must of thought I had. Sally was fine after about five minutes. You live and learn!
So popped to hospital, inserted the new needle and popped home. At the second batch of medicines, after preparing everything, cleaning up, arranging all the medicines, I was about to inject when I realised there was no bung on the portacath pipe. The doctor had forgotten to put one on. Rang the hospital who said I could still inject but would need to pop back to put the bung on. So, another drive, more messing and back home.
At the same time Tracy and Joshua were busy preparing for the ABC Halloween disco which we were running at 4pm, with over 25 children expected. Lots of running around, popping to Stockport to get some face paints, scary outfits and eventually all arriving in different cars to the ABC hall. Joshua was very excited and giggling saying ‘Frankenstein' as he pointed to his outfit. Sally was a witch and loved the dancing. She was really excited and danced the night away. You would never have guessed the day she had had, she really is an inspiration to people.
Another milestone for Sally. Traditionally Sally always decides to have a high temperature and nearly a convulsion at every Halloween disco in the past seven years, she didn't this year, whaaaaaa hayyyyy. I let some of the children put my face paints on and then scared the rest of them! Tracy was also a witch and had all the gooey games planned with slime buckets, rats tails and mice. Tracy loves this sort of party and is an excellent host and organiser. Joshua had his usual Saturday stresses and was very sick in the car just as we were about to go out in the morning. We need to work out a strategy in how to cope with this, maybe a storyboard or something similar. We didn't tell him about the Halloween disco until ten minutes before arriving.
As you have probably gathered, Tracy and I don't like to stop moving for too long and had arranged a night out with some friends in Manchester so it was back to the house, get the children to bed, welcome the babysitter, go through the medicines and then off to Manchester in the rain. We had an excellent relaxing night collapsed in a couple of bars. Again, this is thanks to having someone we trust looking after the children.
Joshua and Sally were raring to go on the Sunday, I can't say the same about Tracy and I. However, due to the rain we decided to take the easy option and go to the Manchester science museum. It's relatively safe, has an indoor bit with only one exit, lots buttons to press, flashing lights and things to play with. However, the rest of the world had decided to come as well so it was absolutely manic. Joshua just wanted food so vanished to the café, and I found somewhere to do Sally's IV antibiotics. The usual routine, prepare the medicine's, clean up and then.... the first saline injection wouldn't go in, as it appeared to be blocked. I'm a little scared of putting too much pressure onto the syringe as you imagine the blockage shooting into Sally's artery's and causing a clot. Found Tracy, rang the hospital and arranged to take Sally back in.
By now we had had enough, with only one day's medication left we told the hospital that we were finishing the medication as it was getting unfair on Sally to keep having the portacath inserted. So, another afternoon at our second home to have the portacath flushed with some stronger anti-clotting medication.
It probably worth taking a breather at this stage just to take a glimpse at the state of our minds. Sally does get upset with the constant hospital visits but not to a great extent. Her understanding is still very much the here and now with only traumatic events seeming to last longer in her memory. She will protest for a short while whilst the portacath needle is inserted but she is generally a little star and just accepts that she will be held down and the needle pressed into the side of her chest. If it was me I'd freak and run as far away as I could.
Joshua, on the other hand, feels and absorbs the emotions of us all. He takes on the stresses of the family and gets very concerned about Sally going into hospital. When she returns home he is very cuddly, in his own way, and will nuzzle Sally whilst she uses his head as a drum, sisters eh! Tracy and I run off adrenaline whilst Sally is ill or is having treatment. Tracy reacts immediately and gets emotional during the period, whereas I have a delayed reaction of a week or two. Our bodies know they have to continue even though our minds our shouting ‘slowdown, rest, stop moving, collapse, etc...' I think we have evolved into pack horses and just trudge on regardless. It now takes a lot for us to totally shutdown... see the first paragraph for me!
It was then mid school holiday and Tracy had a packed agenda for everyone. Unfortunately I was at work all week so of little help. The week consisted of a cinema trip, miniature train rides at a local garden centre, day trip to Eureka and local parks. Tracy had managed to arrange respite from a number of organisations so had someone with her to push the second wheelchair. It was also Tracy's birthday one night so we all had a happy birthday tea.
As I have said before, the lows always come with some pretty good highs, well two just dropped themselves onto our family this week.
Val from Dragonfly rang on the Wednesday and asked if Joshua would like to go on a Santa flight in December with one of their staff. This is a charity circular flight, which incidentally we did with the ABC Group some years ago, with songs, presents and father Christmas. We said yes as Joshua would love it.
The second high was even higher. On Thursday Pat from Dragonfly said they had the opportunity for one family to go on a family trip to Florida in October 2009. I quickly said we'd love it but then was concerned how we would get Sally insured, oxygen on the plane etc... Pat explained it was with a charity which has nurses, paramedics, staff and other families so everything is arranged. Wow, this is impressive. It does have it's advantages having special needs children! We haven't heard anything about it yet so waiting very excitedly each day for something to arrive in the post just to confirm that we weren't just making it all up.
During the holiday week Tracy came down with a full blown cold so had to soldier on. I took over as soon as I arrived home from school and let Tracy collapse and go to bed early.
We had an invitation to a Bernstein Classical workshop at the Royal Northern College of Music, with a group from Francis House. This was a workshop aimed at school children, an exploration of Bernstein's music and some interaction for the children. Joshua and Sally were transfixed and loved every moment of it. It's amazing how classical music is an instant hit with the children. Joshua becomes very focused and listens intently for the whole piece. Sally decided to vocalise her now perfected, ‘Jo Jo Jo JO JO JO JO Jo Jo', at the amusement of the school children. I tried to cover Sally's mouth to quieten her down but this just encouraged her to then blow raspberry's on my hand, again at the amusement of the school children who couldn't believe someone was getting away with it.
I love moments like this when other children look at Sally in admiration as she is doing something that you just shouldn't do. I can just shrug it off and indicate that she's special needs and it's perfectly acceptable behaviour. No one has any control over Sally so we just let her do it. We have learnt this, her school teachers have, all her carers have. Sally believes the whole world revolves around her and it does! Sally is developing a skill of making as much noise as she can when the situation dictates she should be quiet. As well as the concert Sally was very vocal at the cinema, with children telling her to be quiet. Again, this goes completely over Sally's head as she just loves the acoustics of a quiet place and her voice. It's a pleasure to hear her breaking the rules no one else dares to.