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We, my mother and I, went to see Mamma Mia tonight. I was anticipating a feel good film that would leave me feeling happy and light by the end. Now, I just feel like there's something wrong with me. For those of you who have still to see it, please do. It is a happy-go-lucky film, it's just that as I watched scene after scene of sunshine, dancing and people having a carefree happy time, I just felt so sad and lost. I yearned to be able to go somewhere hot and sunny (I haven't left the country for 5 years). During the scenes with all the women dancing along the paths and pier my eyes started pricking as I felt acutely that I had lost the ability to let my hair down and be carefree. I don't know if I can remember how to have a really good time anymore - one where I haven't got a medication and tube feeding schedule in my head; one where I haven't had to plan it over a week in advance, write lists of care plans for people, feel like I have to check in and have my phone within easy reach blah blah. I just can't let go. I can't remember the last time I let go fully. On the rare occasions I get the chance of a night out, I'm too tired, and too nervous/unsure to go out there and do things. I'm so out of practice. So I sat there holding back tears through most of it, feeling ridiculous, frumpy, boring and fat. I miss the person I used to be. I now feel really ennervated, deflated - surely not the emotional state the film-makers were hoping to evoke!
 
Could I tell my mother? NOOOoooo. I tried to hide how I felt during the film and after as well as I could. She already feels guilty enough for living and working outside the UK. She feels guilty for not being able to help me as much as she would like. She's got some health problems of her own and is rather depressed about them too so I know she would take it really badly if she knew what I'd written above. She'd be so desperate to help, but she's leaving tomorrow to go back to work. It wasn't the right time. Besides, the film helped lift her mood. It really would have been crappy of my to burst that bubble. I don't know if I can ever lay this on her.
 
When I have stopped wallowing, I will pull myself up again (don't we always?) and work out ways of having a bit more fun. I know I really need to push my DP to take more responsibility. It's not that he doesn't take care of the kids, it's just that if I am around he simply doesn't take charge. There have been a few events we've been to where it's been my turn to supposedly let go and have a bit of a drink, but even so I end up doing the lion's share of feeds, med administration etc. This must make him sound like he's useless and thoughtless, but he isn't, I just can't let go of that internal timetable. It doesn't help that this year he's already had 2 trips to Hong Kong on business for a fortnight, and is going away for 3 weeks next month. I'm so used to taking charge of everything that I don't even really miss him. What I really need is to get away from him, and both the kids and have a weekend away with some girlfriends - it doesn't even have to be anywhere exotic, just away! I think I'll leave my mobile phone off or at home too. I need to prove to myself that I AM dispensible in the short term.
 
BTW, still no word from any of the relevant parties re Angus and the LTE. They now have the authorised letter from Prof Elliott. I am going to start phoning and writing letter now instead of doing emails. Letters have to be read and filed. I'm not sure that emails are.

I suppose it was too much to hope that the letter from the Professor at GOSH would get done and sent the next day as promised. :sigh: I emailed Dr. P at the end of last week to see what he thought and to give him my version of the discussion at the appointment. I got an email back on Tuesday - a week after the appointment - to say that he couldn't move things further on until he received the letter. So, the rest of this week I've been phoning his PA to see if they've got it yet, and phoning GOSH to see if they've sent it yet. It turns out that the letter was dictated over a week ago, but it has not been signed/authorised because one of the surgeons is off sick and the Prof is filling in for him. I feel a bit guilty about chasing him up to sign this letter when there are emergency and planned surgeries which are much more important in the grand scheme of things, but my priority is Angus and getting what he needs. I'm fed up of things not being straight forward when they should be. I'm more than fed up of having to check up on progress and chase things up all the time, every step of the way. I have learnt not to trust what busy people say they will do - and I hate having to give up my naturally trusting nature.
 
I had a chat with one of my patients at the start of the week. I've seen him for a number of things over the years and know that he is involved in management within the NHS. So I asked him if he knew anyone on the board to have a chat to them and make our case a little more personal. He said to email him with the details, which I did, but I haven't heard back from him either. I know it's only a fortnight, but all these delays add up - the fact that we've only got this far since Feb 2007 shows that!
 
Angus is doing OK at the moment. He has a major snot nose going on, but it's not making him ill. He's reached his target weight of 12kg so we've reduced his tube feeds to 300ml/300kCal per day again to encourage oral feeding. Since then he's been making bit more progress with eating. He ate 2 tablespoons of puree yesterday which is a first for him - at two separate sittings. He's been eating thin sticks of cheddar, tomato ketchup (I made my own so a bit heavier on the tomatoes and lighter on the salt and sugar), butter and Marmite. He's also been drinking more of his chocolate milk, but the Feeding Clinic want me to start buying low cal chocolate milk so he doesn't fill himself up with drinks and starts getting to grips with solids more.
 
He's heavily into Power Rangers Mystic Force and has been watching Disc 6 of the box set endlessly. I've kind of fanned the flames by buying him 3 different types of "Morpher" from eBay. He loves the Mystic one even though it doesn't work electronically anymore. He's been "rangering up" at every opportunity which is cute and funny.

Anyway, Greater Glasgow Health board wanted a second opinion on Angus before they make the decision about funding his trip to America. We got an appointment to see Professor Elliot in Great Ormond Street (GOSH), who is the head of the cardiothoracic surgery unit.
 
All my planning ahead made things much smoother and we arrived at the hotel in Cheshunt without a hitch. I hadn't forgotten anything (which is amazing for me) and Angus was totally fine. We did not sleep well. Angus had slept a lot in the car so was full of beans. He went to sleep around 10. I spent a lot of the night lying with my eyes shut, wishing myself asleep. I woke fully at 5am, but stayed in bed until 7. My eyes felt so dry and yucky.
 
We drove to a town called Potter's Bar, from where we could get a train in directly to one of the stations near GOSH. We found a free, unlimited time span disabled space near the station, and then Angus started his adventure. He's never been on a modern train before so he was really excited. Once we got to London, we walked to a park near GOSH and Angus wiled away the time on a swing. He'd let me push him in a swing for hours, but we didn't have that long - so we thought.
 
When we arrived at GOSH, we were told that the Prof was doing an emergency operation. We were put into a room with toys and a multi-sensory unit and we waited about an hour during which time his registrar came to see us and had a look at Angus' fingers and chest. I then asked if we could leave a number with them and go to get some lunch, which was fine. We got the call to return just as we finished lunch - nice timing, huh?
 
 The Prof was very pleasant and had a look at Angus. He’d also waded through all the referral information including the 3D CT scans of his chest and lungs. He agreed that out of all the available options, the lateral thoracic expansion operation was the best one for Angus, and that he thought it would certainly help in the short term. He said he could not say whether Angus would need further surgery in future to enlarge his chest as it depended on how fast it grew relative to the rest of his body and respiratory demands. He promised he would dictate and get a letter sent off to the Board today in support of our cause.
 
Short of him saying he would do the operation himself, this is the best news we could have hoped for. He doesn’t do this particular operation, but would be prepared to learn. However, since England and Scotland work on different health budgets, it might cost the board just as much to send him to Great Ormond Street for treatment as it would to send him to America! Now we wait, yet again, and I will pester them once a week until we get some sort of answer. I am so tempted to send them a montage of Angus so they can see who they are making decisions about. I don’t want them to be able remain completely impersonal. So watch this space yet again. I will be flabbergasted if anything moves quickly from now on, but it would be wonderful to be surprised. The Prof did say that he would mention that the sooner surgery can be done, the better the result as Angus can grow more lung tissue at his age.

Angus' actual birthday was on Friday this year. Things were complicated though because he attends one nursery in the morning and the other in the afternoon. The afternoon nursery was closing early on Friday, so he had to have his nursery party on Thursday. Then on Friday he had a party at his morning nursery with a Spiderman cake, crisps, and assorted party bags to hand out. He was full of beans when he came home, regaling me with tales of everything he'd got up to. I made his 3rd birthday cake that night, but this had the special topper on I'd ordered from eBay which had his face on it above a display of Mystic Force Power Rangers. The fridge was stocked with goodies for the next day when his real party would be.
 
Disaster struck the next morning when his main friend and family couldn't make it. Angus took it well, surrounded by presents as he was - I think that helped to numb the pain, y'know? LOL! I busied myself preparing a Greek-inspired menu with slow roasted lamb on a bed of rosemary and garlic, crispy roast chicken with lemon and thyme, homemade hummous, tzatziki, taramosalata, felafel, and pitta breads. I only got pizzas and mini sausages for the kids since at all the kids' parties I've been to recently, the children hardly touched any savoury food. I figured if they were still hungry after that, they could tuck into the chicken and pitta breads. My best friend did a sterling job of tidying up along with Gav. I couldn't have done it without her. Angus just trotted about playing with all his new toys, whilst wearing his green Power Ranger's costume. The helmet covered his eyes most of the time because it's so big, but he carried on gamely nonetheless. As guests started to arrive it livened up and everyone got on really well. There weren't a lot of kids, but Angus didn't care, because overall, there were a lot of people which meant it was a BIG party, and that's all that he was worried about. I organised a couple of games of pass-the-parcel, and musical statues, but Angus didn't want any more games than that - what an easy going kid, hey? He spent a lot of time off his ventilator because he was distracted by so much going on. He was perfectly happy all day - so unlike many kids I've  witnessed who seem to get over-excited and end up having a meltdown about half way through their party. I was really proud of him.
 
Juliet's friend brought her little brother round who is 2 months younger than Angus. He's about twice his size, but I was struck by how indistinct and immature his speech was compared to Angus'. I'm not writing this with any sense of smugness, simply relief in knowing that all my concerns about whether Angus has been badly affected by his difficult start in life, trach, and hearing problems, are unfounded. He speaks pretty well for a boy of his age - his sentence structure is complete, his subjects and objects usually agree, and his vocabulary is good. He ends some words sounding a little like Sylvester the Cat, but it must be hard to decipher those palatal sounds in the back of the throat when you can't hear them properly or get a clue by seeing how the tongue is working in the mouth. I'm very proud of the way he has compensated so well.
 
Today we went round Drumpellier Country Park on our bikes, with Angus in his new bike trailer. He mostly enjoyed it, though the ride was rather bumpy in places. Gavin and I are thinking of getting some polystyrene blocks to put either side of him, and under his feet to add to his stability. He has good sitting balance, but his feet don't reach the bottom of the trailer, and his wee chest is just too narrow to be held securely by the straps. Polystyrene blocks will improve the situation without adding significantly to the weight of Angus+ventilator+/-oxygen. After our ride we flew kites and Angus used his new Power Ranger's kite that I picked up for a song. The weather was really windy so it was perfect for kite flying. Angus held the kite himself, though I hovered a fair bit, feeling how strong the wind was. He worked out that if he moved the kite to a particular area, there was a down draught which made the kite nosedive into the ground. He thought this was hysterical and did it several times. Thankfully the wind was strong enough to pick the kite up again with the merest tug of the string and send it soaring upwards again. I took him back the the car when the wind got too strong and he was getting cold. He sat and licked crisps and stared out of the window at his dad flying a stunt kite.

Last Friday I took Angus to see the Endocrinologist. He was weighed and measured at this appointment at 82 cm tall and 11.14kg in weight. When he was 3, he weighed 11.7kg and was 81 cm tall. He's going to be 4 on Friday so only growing 1 cm and losing weight the past year is not good. I can understand wanting to keep him hungry to encourage his appetite and oral feeding, but there are other priorities like breathing which are not going to improve without growth. I am going to contact the Feeding Clinic tomorrow and tell them that we will be feeding him up for the next 6 months to give him time to catch up. It's not like he won't eat anything orally when he gets more tube feeds anyway. I don't want them to think I'm not motivated to get him eating, I am, I'm just more motivated to get him breathing independently. When he's this skinny he tends to get ill and have difficulty fighting the infection off as well. I'm going to feed him up until he weighs about 12 kg, and see how he does at that weight for a couple of months.
 
The Endocrinologist wants to start him on growth hormone for a year to see how he responds to that. It won't increase his terminal height, but it will increase his appetite and hopefully help him catch up in growth to where he should be for a child with his type of dwarfism. The prospect of giving daily injections doesn't worry me from a practical point of view, though obviously I'm concerned about how Angus will take it, and I don't want him thinking in later years that Gavin and I did it to try and make him taller, because we don't have a problem with his height - I just want him to grow to have a bigger chest! I'm not sure about all the ins and outs of it yet, but we are going to get more info from the Endocrinology nurse soon and take it from there. Some kids with EvC have lower than normal levels of growth hormone, so if Angus is one of them, it will be worth giving it to him to make sure he reaches his full potential.
 
No no word from either Columbus or Yorkhill yet. I will needle them tomorrow afternoon if nothing received.....