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.

Confession

I have a bit of a confession. I think it's a bit shameful; though nothing in the slightest bit gossipy or interesting.

I have a perfectly adequate bedroom and a perfectly adequate bed. It is right next door to Wriggles' room and there is but a wall separating us. Theoretically.

Yet, since about the end of July, I have been choosing to sleep on an airbed on the floor of Wriggles nursery room. 

I moved in as a temporary measure before we ended up in hospital for the millionth time when she was poorly, as she needed monitoring very closely and was awake most of the night crying and coughing. Then, we we abruptly came out of hospital over a fortnight later complete with feeding tube, pump and equipment, it made sense to sleep in with her in case she gagged and was sick mid-night, or the machine started beeping or the feed ended, saving fumbling in the dark, walking into doors or missing any of these cues because I couldn't hear.

I think it's come to the point now, nearly a month after her PEG tube was placed that it is now more for my benefit and comfort than hers. If I was worried about noise, I have a baby monitor, and really my flat is not huge. I know she would be be quite fine if I wasn't there: it's me that might be a wreck. It sends me into a panic, the thought of being apart. Maybe that isn't entirely true: what I am scared of it that something will go wrong and I won't hear. When I am in touching distance of her, there is not a lot I miss. The slightest whimper and I can be there. If she rolls over and gets tangled in her tubing, I can drag myself about a metre to the left and untangle her. Simples.

But what if I didn't hear next door? What if she started labouring breathing? What if she was sick? What if she paused in breathing? What if, what if....so many what ifs. So many what ifs that are unlikely but still there. Because after the last two months, if it isn't a dead cert, then frankly I'm not interested. I don't care for your probablys, your averages, your statistics, your maybes. I want definites and I want to know that I will be in the right place and the right time. I am sick of taking chances and of looking at even minuscule risks. I am done with what feels like playing games with my little girl' health. 

I'm not sure it's healthy, but I'm not sure I can move back yet either.

Tears

6:18pm

It's teatime and there are tears. 

This isn't unusual. Wriggles' aversion to feeding has often distressed her to the point of tears in the past. I have long learnt that if this reaction is even hinted at, to chalk it up to experience and leave it for another go later. Somethings are just not worth it if that are that bad.

What is unusual is that today the tears are from me: I am crying.

But not from frustration.

Wriggles has just put a vegetable finger to her mouth.

No wait, she has put it in her mouth.

And...

I hold my breath, almost too hesitant to get my hopes up.

...bitten, chewed and swallowed! 

Tentatively, over about an half an hour, she returned again and again to nibble away at the vegetable finger. What was even more incredible than this* was the fact that when she couldn't cope with a texture, like a whole piece of sweetcorn, rather than gag and vomit like she has always done, she moved it around her mouth until she could spit it out. I was amazed at this sudden leap in process than I have been waiting for for what is now over a year. To actually willingly handle food, put it to her face, try some, repeatedly try it and use her oral motor skills to break it down... it is so simple and what we take for granted, but it is such PROGRESS and even thinking about it now brings a lump of pride to my throat. 

The past year has been a rollercoaster and has taught me a lot in patience and acceptance and I must admit, there were times like in recurrent weeks whereby she would not even go near food, where I fear it would never happen and we would succumb to tube feeding. I have a small section of baby and children books on my bookshelf that have taunted me with their weaning guides and food ideas. Before Wriggles came home and long before weaning, I devoured them soaking up ideas and formulating my own plans. I talked to the neonatal nurses about weaning premature babies and read the Bliss literature. I couldn't wait and had a box of food items and accessories before she even reached term. I did not forsee  a fraught period whereby she wouldn't even entertain being near food or touch cutlery; I didn't know the work that would be to break down her fear or distate for the sensory textures. Slowly, we have introduced milestone after milestone and now, a taste and management of "real food" is the icing on a cake. I'm not expecting miracles; it might not even be the beginning of the end of this time, but I am so pleased for her.

 I am so proud of my clever baby girl.

"What's all the fuss?"

*if you have never read anything here before, Wriggles has struggled with oral aversion and building up trust never mind a variety has been a very long slow process. In over a year, we are now at an albeit limited, "stage two" of the weaning process!