In the style of C&C music factory (WHO???? I hear you young whipper-snappers ask, google it, it was a great song!) I’m having one of those weeks, well month’s really…things that make me go hmmmnnnn….
The Minx has been suffering with stomach issues for a while now – more than her “normal” ones. She can eat orally but her neuromuscular condition makes it hard for her to chew and swallow enough on a day to basis to sustain her weight and so she is also fed by gastrostomy – a little device that sits in her tummy and allows us to pump specialised milk feed directly into it (SLOWLY – don’t want you having images of her blowing up like a balloon and then whizzing off round the room!) on an overnight feed.
The gastrostomy is our knight in shining armour as it were but if you had told me that some 4 years ago, I would have snorted in outrage and de-friended you on FB (the ULTIMATE insult 😉 ) Around the age of 15 months she had a naso-gastric (NG) feeding tube placed which as the name suggest is a tube that goes up through the nose and down into the stomach. It is a very visual slap in the face – “LOOK AT MY CHILD, SHE’S DIFFERENT” – and whilst it was definitely very necessary, I was in no way prepared for when the tube went in, how much I would grow to hate it and how quickly I would wish for surgery, much as it ultimately kept the Minx alive as she was eating practically nothing orally.
When the bods at GOSH suggested gastrostomy to us a mere 6 weeks after her NG tube had been placed I was horrified. I felt the NG was only a very temporary option to boost her, help her gain weight and stimulate her appetite – the very things we had been told when it was first decided to tube her and that to subject her to surgery, something so PERMANENT was frightening, unnecessary and unwarranted. Of course with the benefit of hindsight, I now know that we were being gently led into the world that would become our norm and that by the time she had had her NG in place for 9 months, we would be downright begging them to go ahead and do the surgery.
Minx has always liked to be different, walk her own path and generally confound the medical docs with her fairly extensive list of wonky bits. Every time we meet someone new in her list of medical professionals I hear the phrase “she’s very complex” In fact I may well rock in the corner, laughing hysterically, the next time a professional utters those words to me. Yes, thank you she’s a complete conundrum and no my husband and I are in no way related other than by marriage before you ask your next question – I’ve grown a thick skin now having been asked that question prolifically over the last 5 and 1/2 years – I know I was born in the back waters of Jersey and all but I feel like I should have tattooed on my forehead – “we are not related” – Parents of other medically complex children will appreciate that; I am sure you have also been asked it relentlessly too….
So back to her “wonkiness” or as I prefer to think of it uniquely differentness; we should have known that *just* having a simple gastrostomy alone would not be appropriate for the Princess of Minxiness. Nope, she also needed a fundoplication – an operation to create a wrap around the top of the stomach to stop her refluxing food/drink and even saliva into her lungs and this was carried out at the same time as her gastrostomy.
We had hoped that the two procedures together would have put an end to her frequent vomiting and retching but it wasn’t to be. She didn’t really gain weight properly and she didn’t feel better, look better or magically become a different child full of pep and vim. We tried different milks and more medications to no avail. So a year down the line, gastro-intestinal doctors became involved in her care and they decided to scope both her stomach and bowel to see if they could find the cause of her problems.
Scopes showed that she had a duodenal ulcer – OUCH – and very delayed gastric emptying of the stomach as well as severe constipation. So a rapid change of milk feed into an allergen free formula, multiple medications including steroids and an exclusion of wheat, dairy, gluten, soy and egg followed. Frankly trying to feed her anything orally was a nightmare – it’s amazing the number of every day items that contain a mix of one or more of the aforementioned ingredients. Yes the supermarkets have moved on massively and there is a fairly good range of substitutes out there but trying to find bread for example that was both dairy AND egg free was impossible. They either contained one or the other. I had well-meaning friends e-mailing recipes of bizarre sounding bread concoctions that took about 3 days to make and weren’t terribly conducive to doing so in conjunction with a family life of 4 children, work and a hubby working shifts – well not if I wanted to factor in sleep as well…selfish I know 😀
Well we persevered over the years and have successfully managed to re-introduce egg to her diet but that’s the only one of the restricted foods. As time has gone on and Minx has matured (the grand old age of 5 3/4 you know), it has been harder to be so strict with her diet, especially when out and about. She wants to be like the other children and eat what they eat. She wants to eat pizza with cheese and pasta with creamy sauces and whilst I can recreate quite a lot of this at home using substitutes, a lot of restaurants still aren’t up to speed. In fact I guess we are lucky that in Minx’s case, foods *only* causes pain and not an anaphylactic reaction. Lots of items might be gluten free but they are not dairy or soy as well – it’s a minefield of picking the least evil food of the lot…Those of you with life threatening allergic reactions have my every sympathy.
We had reached a fairly evenish keel over the last 2 years. Her ability to eat orally has increased with age and strength but still not enough to cut out feeds entirely. Nonetheless switching only to overnight feeding (much as I was against it initially) has given her certain freedoms at school of not being connected to a pump/backpack and maintaining a typical day with other children.
But now that precarious house of cards is not just rocking on its foundations but swaying in the wind like a hurricane is in the off. Minx’s pain levels have suddenly ramped up significantly. Her eating orally fluctuates massively day by day. Her energy levels (always tricky to manage anyway) seem to be harder to do so. She’s spending far too much time in the “smallest” room of the house – I’m trying to phrase that delicately! She spends so long in the bathroom that school have joked that they are thinking of supplying her with a selection of magazines so she can browse in peace whilst completing her ablutions. But all this comes at a price – to her education, quality of life, normality and the fact that ultimately she is just a little girl who wants to dress up in Princess outfits, steal my shoes/handbags/lipsticks and enjoy being with her friends.
I hate hearing her in pain and distress, sitting on the toilet or sofa crying and rocking. I feel helpless when she begs me to stop the feed she’s on overnight because it hurts too much – knowing that she needs those calories to keep strong but that they are also causing her such discomfort. She’s on 12 medications a day for goodness sake – surely something must work or be changed but what we don’t know. So we sit with Doctors and dieticians and community nurses etc, jiggling and juggling medications, dosages, being stricter on the treats she’s allowed when out and about and waiting to hear about more surgery.
Our team believe that Minx’s pain threshold is significantly higher than that of your average child anyway, bearing in mind the experiences she has already undergone in her tender years. I guess when your child tells you that having her ears pierced hurt less than having a cannula (a thin plastic tube inserted into the vein for giving medications etc) you realise they have a different perspective on pain. And it hurts me to realise how this has become our, or rather her new norm. So used to hearing her say that she hurts every day and because she just gets on with living life in between bouts of pain, it has woven its way insidiously into our lives and we haven’t fought hard enough or quickly enough to get to the bottom of this.
Her gastrostomy button having been in place for 3 1/2 years now is too high on her ribs and that in itself causes pain and discomfort. She’s on the urgent list for surgery and we would like the gastro team to scope her at the same time if remotely possible to see what else we can find out and what we do next. We don’t yet have a date for her surgery and I know from past experience that trying to get 2 different medical teams to liaise with one another, nevermind co-operate from a surgical perspective is like trying to move Everest. But I am a warrior Mum and I will get the very best care for my daughter, whatever that takes.
So today, I am sat here listening to her reading with Daddy and feeling alternately immensely proud but downright sad and helpless that once again school, have reported back that she has been over tired and in pain but still soldiered on. I don’t want to put her though anymore procedures or pain knowing that she is terrified of Doctors and needles and operations but right now I don’t know what the alternatives are and we can’t keep on going as is. So I will pull on my tough but loving mother exterior and promise her another (extortionate) trip the Disney store for being brave and strong. Credit where credit is due, Minx knows that she needs surgery and is already trying to fleece me royally every time we pass something that she wants with the big, sad eyes and pitiful “but I will have to be brave Mummy so pleeeeeeessseeeee???”
Well it’s time for me to “woman up,” pull on my big girl boots and pants over clothes, to be “Super-Mum” and fight for my daughter but right at this immediate moment, it’s time to start preparing dinner, something that the entire clan will consume….oh Lord, did someone mention the F word again?!