Every so often, just for a moment, I have the sudden crazy belief that perhaps this is all a mistake. Somebody somewhere is going to realise that there’s been a mix-up at the labs and Pudding hasn’t really got Hunters. But I know, of course, that that’s never going to happen…
Well, that I was a full-on few days…
Setting off at 5.30am on Tuesday was easier than I thought seeing as I’d already woken up an hour before. Dark though, and it was tipping it down with rain so visibility was not great. Once we hit the M1 there was a traffic jam and right after we ended up driving on a newly-tarmacked surface – the heat was turning rain to steam and for a while I couldn’t see a thing. Scary! The rest of the journey was slightly better apart from a scare when someone slammed their breaks on just in front of me. And we did get to the hospital bang on 7.30.
Withholding food and drink from Pudding actually went better than expected – he only asked a couple of times before theatre (9.30) and was otherwise pretty well distracted by TV and playing on the tablet. I lost count of the number of people coming round to see us though – trainee anaesthetist, ENT registrar, portacath surgeon, consultant anaesthetist, theatre nurse, ward nurse – even Niamh and Claire came by to say hello (and got a lovely cuddle from Pudding).
Hubby took him in for the anaesthetic and came back in tears. He said it just happens so quickly – Pudding was knocked out and whisked away. We went for a (rank) breakfast in the hospital restaurant and then sat down to wait for the 2 hours expected. That went by. Then another quarter hour. Then another. And another. The ward nurse said ‘The waiting is the worst bit!’ and I agreed. But it wasn’t – that came later.
When they came and said ‘They’re ready for someone in recovery’ I leapt up. He was lying on a trolley, still with his eyes closed, being monitored. My throat closed and the tears welled up. His mouth opened in a cry as his eyes screwed up tight. I tried to reassure him but could hardly get any words out. I never want to see my child like that again, but I know I will. We were wheeled down to the High Dependency Unit, where he had to stay for the night, as a precaution.
Pudding was sounding so miserable and I climbed onto the bed to try and comfort him, but it didn’t really help. Even the TV only helped a bit. He had a bit of cordial and a mouthful of toast but wasn’t really keen and no wonder – a while later he was sick and that carried on for a while. It wasn’t too frequent, but he certainly wasn’t keeping anything down. He slept a bit, ate a bit, drank a bit, ate a bit, watched TV and whinged for the rest of the afternoon. He got some more anti-sickness meds around 6pm and after that wasn’t sick any more thankfully. Through the night, he woke up a few times while I was upstairs in parent accommodation failing to sleep myself, but the nurse coped ok with him. He obviously wasn’t in the mood for his usual night-time partying!
The next morning we were still on HDU and Pudding was eating well, but fairly compliant still. The paracetamol and ibruprofen were obviously still keeping the pain levels under control. We had his ERT done by Niamh while we were still there – using the port for the first time. He did seem to get a bit of a temperature for the second week running – hopefully not the start of an infusion reaction as that would mean they would have to be slowed down. We were done by 12.30 but didn’t actually manage to leave until after 3.30 due to various admin problems. Very frustrating. It was fantastic getting in the car knowing that we were heading home, though the high-pitched ‘Bnng, bnng, bnng’ of the monitoring equipment in HDU followed me much of the way.
Highlights were Hubby and Niamh pushing me out the door to go get meals at various times, including going outside to eat real food from M&S sitting in the sunshine. Felt wonderful.
Feelings I was left with: gratefulness that Danny was obviously not nearly as ill as some others on the ward, but despair that this will not be the last time we’re in a similar situation, and things may get worse.
By a coincidence, Niece happened to see a programme last night which apparently had a Hunters boy in it who died. This was the first she knew of the potential shortened life span and it obviously upset her, so Sister had to have a difficult talk with her, saying that yes, it might happen but we just don’t know at the moment. Not nice. Twiglet still has no idea of that, and I’m not sure when we would address that, even if we do find out.
Last night when we got back Pudding was playing football outside, so happy to be released. I said that he had been stuck on a bed for the last two days and Twiglet replied, ‘Having Hunters is horrible.’ Yes, love, it sure is…
Another Manchester day, but this time, it’s Pudding’s operation so we’re setting off even earlier today. Which of course means, I’m awake way before the alarm.
I’m nervous about today, but not so much about the op itself. He’s having the portacath put in, grommets in his ears, and tonsils and adenoids mostly removed to increase space in his airways. I know they are all fairly standard procedures, and although the airways can be awkward in MPS he’s having it done in the best place. (OK, I know I won’t be so calm while he’s actually under). But what I’m definitely not looking forward to is not being able to feed him beforehand.
I’m trying to remember a conversation we had with Twiglet last night while getting ready for their bath. He said something about the future, implying a time when his brother is better. Hubby explained that Pudding will always have Hunters.
‘What? He’ll always have Hunters?’ replied Twiglet.
‘Until he’s dead?’
‘Because then he’ll always be cute!’
I guess, Twiglet has a slightly different perspective on this condition than we do. But hey, it’s still a valid one! Of course, when he’s just been whacked with a spoon or toy car he doesn’t always feel the same.
Other positives from the last week – we’ve got the DLA now (higher rate care because there are night time issues too, but not mobility) only a couple of weeks after applying – this will really help with all the petrol, hospital parking, etc. And Pudding surprised and impressed me by sorting 16 counters into red and yellow. Twice!
Another day in Manchester yesterday, and more tears from me. I was already teary after lying awake picturing him going under the anesthetic next week and knowing that we will have a few hours to wait and worry.
Then in the morning as I walked into the hospital I happened to glance left and read a poem on the wall that I hadn’t noticed before, and it said something about stars and that a life was beautiful no matter how long or short… Couldn’t read the rest as I was in tears again.
Pudding was very whingey yesterday and didn’t really want me to leave him. The nurses had two other infusions to deal with so couldn’t help distract him as much as usual. The upshot was that I didn’t get a break until 1.15 when I finally got him to have a little sleep before the psychosocial assessment. Stressful.
But I had to laugh during the assessment. Unlike usual when he has a new audience, Pudding acted more like he would at home. The lovely lady was trying to get him to do some tests such as matching pictures, feeding a baby doll and naming things. He spent most of the time asking for food, trying to escape, throwing things and generally being himself. Silly to feel happy about something like that, but I’m used to feeling a little bit of a fraud when he behaves so beautifully in company, that it was nice to feel justified for a change.
The last straw on the teary front came at the car park. I went to the office as usual to get the parking fee reduced as our treatment took longer than the standard time. Then when I went to pay the £5 charge it came up as £115 to pay! The security guy walked in at that point and when I told him I think he could probably see how close to the edge I was. He just said, ‘Go get your car and when you get down I’ll let you out.’ Bless him!
Is there something about being a parent that sets you out to feel inadequate whichever way you turn? A few times now I’ve read things written by other special needs parents who have said ‘I wouldn’t change X. His condition is what makes him who he is.’ Do I agree? Do I heck! If I could change Pudding in an instant, I would.
Maybe that would lose some aspects of his character, true. The funny dance he does when he wants attention. His wide-eyed earnest look when he’s pointing at something he wants you to see.
But what would I gain? The chance at a more normal life, no endless trips to hospital and the prospect of treatments needed for life. A normal life-span. The chance to shout at him for normal kid things such as not doing his homework or leaving muddy football kit on the floor. I know life wouldn’t necessarily be perfect – I don’t see us all happily sitting around the table discussing philosophy or me clapping proudly as he wins Business Person of the Year. My house will never be an oasis of calm – I freely admit I haven’t got the self-control and patience for that. But I do desperately want my idea of normal.
I know over the next year my attitudes will change. At the moment I’m still fighting against this. Whilst I busy myself looking into support groups, funding for equipment, filling in forms and so on, I still don’t want to accept it. Part of me still hopes for a miracle cure to suddenly emerge, or at the very least for the DNA test to come back and suggest a mild prognosis.
So maybe in a year or two I’ll be one of those parents saying ‘I wouldn’t change Danny for the world.’ But right now, it’s just one more thing that makes me a bad parent. One more reason why I am not as good as them.
Weeks are disappearing so quickly at the moment. This week it’s certainly because of our trip to Legoland! Yay for the MPS Society! Ok, so Pudding probably would have been just as happy with a few people in a field playing football, but Twiglet was mega-excited. Right from the entrance, he was buzzing every time he saw a Lego model. Of course, he wanted to go on rides as well, but was also dead keen on looking round Miniland or the Star Wars exhibition.
The day nearly started in disaster when we got a flat on the buggy – the thought of carrying Pudding around the whole day was more than a little depressing (he’s over 3.5 stone), but at Legoland they have cart/buggy things to hire, and it even had a steering wheel so he was happy with that. And the ride access pass (for those who don’t understand the concept of queueing and would find it difficult – definitely describes our boy) made things a lot easier.
Pudding’s favourite was the Dino Safari ride. Just a simple ride taking you round some Lego models of dinosaurs – he looked so happy and excited – but absolutely hated getting off it again. I also loved watching him during the action-packed Pirate show we saw. At one point, when the pirates were all accusing each other of doing something, he joined in to shout ‘You!’. Bless his cottons!
They both also drank loads of sugary drinks from the refill bottles bought by the Society (meaning that the next day, for the first time since ERT started Pudding did 3 fairly loose poos – otherwise nappies have been so much more pleasant and less frequent!) and ate rubbish. Pudding didn’t nap all day, so crashed as soon as we got to the car at 5.20. I didn’t much enjoy the long drive home (got back at 10.45) but I’m glad we went.
He’s continuing to develop his language and signing, impressing Niece and I. And of course, he’s still winning over all the nurses in Manchester. We’re also getting more support. Our portage lady has put in the request for a respite assessment; the physio in Manchester will send us through to the local place for a wheelchair/buggy that would suit his size better; and our contact at The MPS Society has helped to put together the horrible DLA form and checks how we’re doing every so often. Please God, the Tories don’t pull apart the NHS altogether…
Focusing on the positive today. Pudding has definitely been making a little bit of a leap lately in terms of communication. I think the Makaton seems to be really helping. I don’t know whether it’s that he was already trying to say some of the words and I just didn’t understand, or that having a sign as well makes it more concrete for him, but today when I suggested a sleep, he said ‘Ee’ (sounding just like what he says for eat) but with an approximation of the sign, so it was really clear. He has also started using the sign for ‘Where’ and saying it, and I think today he also tried the sign for ‘egg’ despite only seeing it a few minutes earlier. Brilliant boy!
Also an achievement for today was when I had the animal snap cards out. I’d laid out three of them on the floor and gave him a matching one. Straight away he put it on top of the correct pile. Then repeated it with others again and again, even when there were up to 6 piles to choose from. When I gave him one that wasn’t already down, he looked along the row, realised it was different and put it down separately. I was gobsmacked!
We also had a lovely time at the playground the other day. As usual Pudding focussed in on some older boys playing ball and went to badger them. He then ran away with it, into the hard court area. They followed (six 10-11 year olds) and then played football with him for ages; encouraging him to kick, pretending to miss it, and complimenting his skill. It was so lovely to watch, and really gave me hope for the future, that he will be able to get on in life as he’s so engaging.
Sometimes I feel so scared when Pudding hits out. He does it in frustration when I say no to food, or TV, or need to change his nappy. It’s not just my concern about being hurt – which is a real one. (I’ve had my glasses kicked into my nose, leading to bleeding; I’ve been thumped in the throat and kicked in the solar plexus; I’ve been pushed over when he’s caught me off balance.) What really worries me is my reactions to it. When he hurts me, my immediate thought is to hit back, to hurt him and teach him a lesson; not, I know, the best way of dealing with things and I work very hard at suppressing this instinct. But what else can I do? No matter how often we patiently explain ‘No hitting’, ‘Gentle’ or ‘Hands down’ it doesn’t seem to make the blind bit of difference. Doing nappy changes I can sometimes distract him with toys or singing, but that doesn’t always work either.
The worst part is my worries about the future. If this sort of behaviour continues, I can see the potential for years of it. The other day I read something about parents of an autistic teenager who regularly hits them and can do a fair amount of damage. If, as expected with the ERT, Pudding now reaches a normal stature, he’ll be bigger than me by about 12 years old. He’s already so strong now…
Some days he will hit out at Twiglet loads as well, and Twiglet doesn’t help with the way he reacts to it and escalates the incident even further. But there are of course, beautiful moments between them as well. Just now, Pudding was sitting on the floor watching TV. Twiglet went and sat down next to him and Pudding immediately reached out his arm to pull him in for a cuddle. So sweet.
(The TV is on at 10.30 in the morning because Pudding has been really whingey, but mostly because after I said ‘No TV’, he ran to the toy garage and put all the cars away in the box, put the lid on and stacked it on the toy box, then ran to sit on the sofa. How could I refuse to put TV on after that?!)
Just as I think the drive to Manchester is becoming routine, for the next 7 weeks they are shutting one of the roads so I’ll have to find another route through Manchester. Hoorah!
Otherwise things are settling in. After last time when Claire, another ERT nurse, got the line in first time they didn’t bother getting one of ‘experts’ to do it!
But I did have another wobble. The local ENT guy (that I didn’t like!) had said he wouldn’t recommend grommets as it may not help Pudding’s speech anyway. Yesterday we saw another consultant in Manchester. He actually explained the issues with grommets (potential infections, etc) and that it is unclear what sort of effect they would have, and agreed that hearing aids were not going to be tolerated by Pudding. He was very like our local pediatrician in that he gave me the information and then a little space for me to think about my opinion. I said that given we don’t know what CNS involvement there will be, and therefore how long before any decline in his abilities. The emphasis is therefore on Pudding learning as much as he can right now so if there is any chance at all of improvement in speech and understanding then we should go for it. He agreed! Then he pulled the sleep study results towards him and said ‘Now, these weren’t awful…’ Hmmm.
Upshot is that his oxygen levels are dipping at night. Mr Bateman has proposed taking out the tonsils and adenoids while he’s under having the rest of the stuff done. Fine. I think what upset me is that it’s just another issue that we didn’t really realise about. When he was diagnosed, although I was concerned about the future, I thought there wasn’t much in the way of physical problems yet. Now I can just picture Pudding on the operating table being pulled about and prodded. It makes me feel helpless yet again.