Mixed Start to the Week

Yesterday we had a respiratory follow up at the hospital Outpatients clinic. Although we have been busy with home visits for physio and a short speech and language therapy group, it has been a while mercifully since we were last at hospital. Typically, it had to be the sunniest and nicest day it has been in a long while (...2012?) so we set off early, driven by Wriggles shouting "[S]WIIIIIIIIIIIIIII[NGS]" like a mad child and shrieking if I deviated to do anything ridiculous like locate shoes, brush my teeth or get dressed along the way. To her approval we got on the bus and arrived at Leazes Park which is helpfully opposite the hospital and houses two playgrounds and a rather large lake containing ducks, geese and some enormous swans. I've waxed lyrical before about our playground love, but we really can't get enough of them. Due to her lack of independent mobility, few other places or experiences give her an opportunity to let off steam and energy at her pace. Or indulge her scarily daredevil side.

 

 The appointment was a bit of a let down. I was hoping we'd see either our named consultant who took us under his wing last summer and made the order to place the feeding tube, or either the other senior consultant or SHO who both know Wriggles very well and whose judgement I trust, which is more than I can say for some of the paeds we have come across. Instead we got a new registrar, who was very nice but also very new and said "Ummmmmmmmmmmm..." a lot. In the end, she waited until one of the senior consultants was free to run things past him, which although was reassuring and improvement from some previous appointments, I'd have preferred to wait and have the actual appointment with him to talk things through myself. 

The upshot was that until we have the consultation with ENT about removal of tonsils and adenoids, respiratory can't really move on with much as things are currently stable but could be improved. Since the tube was placed, the admissions and chest infections have decreased massively. We have had one queried aspiration admission, one viral admission and otherwise have broken the cycle of hell and managed bugs at home...albeit only just sometimes. Now that side of things seems better controlled, it has become increasingly obvious that reflux flare-ups are very much interconnected to chest health. It is quite common to become quite reliant on salbutomal inhalers during a bad reflux patch and Wriggles quite often acquires a blue tinge around the mouth when refluxing. So her reflux meds have been upped and the ENT department are being chased. Wriggles mouth-breathes a lot and constantly snuffles, which could be a symptom of her over-large tonsils and adenoids at least partially blocking her airways. This could potentially be putting extra pressure on her diaphragm, aggravating the reflux. So hopefully, taking them out will make an improvement. Please. If not, a fundoplication was mentioned again-although we have some bridges to cross before that luckily. 

Annoyingly, yet another video fluoroscopy referral has got lost in the system, and until that which will assess how "safe" her swallow is now, we still are a no-fluids-orally zone. By the time we get the VF done, it will have been over a year since Wriggles drank anything and I very much hope our feeding/speech and language therapist comes out the woodwork to help with that as I suspect it will not be easy. She never could drink from anything but a particular teat on a bottle and never thin liquids as she choked, so I do really hope we won't be left alone to learn it all from scratch, especially as a will-be-3 year old is a different kettle of fish to an under 1. After clinic running over an hour late, we then had a nice long wait to pick up new dosage meds from the hospital pharmacy. What a treat.

Frustrated by waiting around, being made to sit in her buggy ("WALK!"...which I wouldn't mind, but she tires after a very minute distance thanks to the cerebral palsy and more common Toddler Syndrome, thus making 100 metres a game of musical buggies) for part of the ride home and life in general, Wriggles resumed her tirade of shouting incomprehensible gibberish non-stop, so once home in desperation I let her torture wash Long-Legged-Mouse who has become the victim for most mischief since Noodle the beloved hedgehog got felt tipped and had to spend the night in the airing cupboard which vexed both Wriggles and no doubt him. In the last week, Long-Legged-Mouse has been attacked with Grandma's blusher, repeatedly drowned and nearly been fed to some giant fish.

I don't know what or whom was wetter; Wriggles, Long-Legged-Mouse, me or the kitchen floor, due to a faulty plug in our water table. All were thoroughly soaked, but it used up a fractious hour and finally removed the traces of makeup from poor Long-Legged-Mouse. I hung her out to dry by her tail (it's a tough life) and filled up a large plastic box with water and bubble bath, stripped off the sopping toddler and let her have an impromptu al fresco "bath" just outside the kitchen door on what I fondly call our balcony. Sceptics might call it the top step of the industrial stairs down to our concrete yard. 

To round it off, we kindly treated both our street and the back street of the next one down to my tuneless 'Five Little Ducks' accompanied by my backing-shrieker before Wriggles paraded her bare bottom for all to see. I wish the NHS would provide at least a complementary bubble bath or such for Mouse Washing or such activities needed post-appointments. I can quite empathise with Wriggles that she does get very anxious during them, particularly when they insist on weighing her and checking oxygen levels and thus is a nightmare as she can't quite calm herself properly after them, but it doesn't make looking after her any easier when she just shouts gibber until bedtime as a result. Maybe next time I'll put it in the comments box.

Mental note: request next hospital appointment to fall on a truly rubbish WET day.

Monday blues

I don't like Mondays. If Monday sets the tone of the week, frankly I am done with this week already. 

Today we had our appointment with the respiratory paed. We missed our own paed, but got the other senior consultant who is also pretty good and on the same page largely as our doctor. The appointment was by and large, productive. Wriggles had a lovely time playing with the toy truck (future mechanic?) and all hell only broke loose when she needed to be weighed. Unfortunately she must associate side rooms with nurses as synonymous with blood tests and fear, as in seconds, my chirpy little bean was a screaming, rigid, limpet who needed peeling off me. She was so distressed she was stiff as a board and still crying to be measured, so the nurse wrote down "uncooperative with height". I bit my tongue. FFS, she's fucking terrified, not being naughty! She is 2 and has been through more procedures than many do in a lifetime! I know she only meant it in a jokey way but it really made me bristle.

The actual appointment was very thorough. The immune results are not back but will be chased with a letter to the GP confirming if they request a booster vaccine and if so which one, the feeding they are happy for me to manage with help of the dietitians ("and keep hoping"), her tonsil size was checked and we went over her list of medications and checked dosages. We discussed her sleep study and went over sleep history and patterns and they notes even static in the daytime, Wriggles is a noisy breather. This had got a lot better during the autumn but has slowly crept back more and more. The consultant confirmed he thought it would be beneficial to removed tonsils and adenoids. The tonsils are a moderate size and the adenoids are quite large, and we are not yet at 'peak growth' period. He added it may possibly help the night refluxing, as she sucks in her stomach muscles to help breathe when the adenoids narrow her nasal passages, and the extra abdominal work put pressure on the stomach which combined with a lax stomach valve and tummy full of night feeds can aggravate reflux happening. So whilst it is far from a guarantee, it is a bit of hope. I have also read other parents with food aversive children relating that tonsils being removed helped with food consumption and swallowing difficulties. Again, a sliver but hope but sometimes a sliver is all you need to keep going. I have all the usual concerns about having a general anaesthetic and surgery, but a tonsillectomy/adenoidectomy is a pretty common and standard op and aside from GA the only real risks are infection which in our case is heightened as she will not be allowed oral fluids to help the healing site. But as the consultant said, "I have only regretted not sending some children for a T&A, in 15 years I have never made a referral for one I have regretted or has had negative results." That sells it for me.

The thing which did deflate me was another mention of fundoplication; surgery to essentially wind the stomach top around itself to form a wrap to keep contents from refluxing up. This surgery has been discussed on and off since the summer when aspiration was really taken seriously and the feeding tube placed. If the surgery was simple, I would happily sign on the dotted line yesterday. Control reflux? Eliminate vomiting? Be my guest! However, unlike the T&A this is not so simple. It is more major surgery and there is a higher risk attached. Side effects are far more common and the recovery period can be fraught. It is one I have read up on over and over, and whilst I do see the positives and know it has improved things for many, it is not one that sits comfortably with me. That said, we are running out of things to control it. This decision is one that does not have to be made imminently; the doctors are still undecided on whether it would suit us so we have so time to hope either the T&A, diet, maturity or something magical help to control or better still improve things. We had a chest X-Ray to check for aspiration during the latest reflux flare-up so need to to wait the results now in the post. Letterbox, you will become my new friend.

Talking of letterboxes, one letter plopped through this afternoon. A surprise letter about the previous MRI-which had been a disaster and one I was told there were no results from that would be any use and would need repeating. So to receive some results, was a shock. There must have been an image generated that the neurodisability paediatrician could read. It did cross my mind that there was a mix up, but we have not had an MRI before, only the two cranial ultrasounds performed in NICU. The letter read "surprisingly, there are no structural abnormalities. We will discuss further in clinic". It makes me a little nervous that even our development consultant was "surprised". He was clearly expecting something, I was expecting something, pretty much all the doctors we have seen over the last nearly 18 months have expected that something would show up. So I should, in theory, be dancing on the ceiling. No bleeds, no PVL, no lesions. All in all, pretty excellent. But all I can think is, so what the bleeding hell is causing/caused cerebral palsy? Where, are my promised answers? So many things have been chalked up to something we will never know, is this yet, another? Her history frankly suggests that at some point there has been brain trauma. It doesn't help there is no existing antenatal records, but birth and subsequent events are a hotbed for being able to pick things and say, maybe that. An MRI was going to tell me. To pinpoint. To flag up. To answer my questions. It has just generated more. For CP and spasticity there is something somewhere. But not on this MRI. 10-16% of children with CP have normal MRI findings. Maybe I just have to accept that this is us. An MRI reflects the structure of the brain, not function. I just can't help feeling a bit cheated and full of questions to ask. Does this affect the prognosis, the treatment, the diagnosis? Does this warrant extra tests? Do we need to look at genetics, blood tests, anything else? I have a month until clinic. By NHS standards, a month is not too bad. But it is going to be a long month.

So tonight I feel exhausted. It feels a full on day. I am fed up with dealing with things on my own. Sometimes, just sometimes, I wish someone would make me a cup of  wine  coffee and hold me while I toss and turn all night and tell me it will all be ok. 

I am really fed up of seeing my beautiful mischievous daughter love life with all open arms and for life to not always love her back but deal card after card of yet another thing. It seems relentless. 

Less than two hours until Tuesday. Let it be a more uplifting day.