Monday, January 21

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.

1 comment:

  1. Big Hugs Amymouse, At least she has you to love her back and you do a super job of that xxx