A change is as good as a rest….but can I just have the rest next time please!

I don’t like the post below, it’s not reflective of how I am feeling today but when I sat down to write, this is what came out. Self-pity is something I try to avoid especially in this blog which was supposed to be focussed on the HoPE in HPE but also it seemed wrong not to post this because it’s all true and even though it might not be how I want people to see us, it’s us.

I hate Winter.

Viral infections abound in Winter, everyone has them. In fact mention to anyone with young children that your daughter has a viral infection and you will be undoubtedly be met with ‘oh gosh ours too, isn’t it horrid’.

The pre-op ‘smile’

Naturally in our infinite wisdom we chose deepest winter to affect the biggest change to Mojo’s daily life so far by having her feeding tube (gtube) fitted. Actually as previous posts have mentioned this was in fact attempt three with previous tries being thwarted by illness. As it transpired attempt three should also have been halted by illness but it was a teeny fledgling illness which was yet to make its presence felt. So instead we learnt what happens when you take a teeny fledgling viral infection, pass an intubation tube past it during an operation, transporting it straight into the lungs. You are left with a horrible, raging, dangerous chest infection. In Mojo’s early days someone told me that it is usually complications from things like chest infections which kill children with HPE, it’s something which unsurprisingly has stayed with me and every time I hear ‘chest infection’ my blood runs cold.

Like father, like daughter!

To cut a very long, complex, story short our short hospital stay became our longest stay to date and the six weeks which have followed have been incredibly hard work. Probably the hardest yet. Mojo has been sick at least twice a day for 6 weeks. Twice a day. SIX WEEKS. She still cannot breathe through her nose and therefore cannot sleep for any period of time without waking making a heart-breaking frustrated screaming noise. The only way to ease this is to intercept it as soon as she starts to become unsettled, which has meant that one of us (and usually my husband as I’m still breastfeeding baby Ce) has slept on a very small camp bed next to Mojo’s bed every night. Six weeks.

Since the operation Mojo’s illness combined with her inability to breathe through her nose has meant that the feeding tube which was meant to be an emergency-only fluid top up tool has become her primary and indeed, most days, only source of nutrition. She no longer chooses to drink anything by mouth. I am still praying that this is a short term thing that will improve once the breathing problems ease. As for the vomiting, I’m still trying to find some answers.

Needless to say the start of this year has been exceptionally hard work. Yet when people ask I still find myself saying the same thing.
‘How are you all’
‘Oh we’re fine, Mojos not been so good but we’re okay’
It’s because it’s impossible to explain what it’s like living this life. This knife-edged, sleep deprived, relationship testing, sanity pushing daily wade through treacle. So you put on your game face and you go to work.

Then you have a good day. Mojo wakes up and she’s slept for more than two hours in a row, she’s in a good mood, smiling, laughing. She doesn’t throw up her breakfast, or her lunch. She chats away in Makaton to you. She’s well enough to do a normal activity like go to the swings or even the cinema. She comes home and wants to play games and read books. Then you feel like everything might just be okay. Even if by bed time she’s been very sick and is struggling again to breathe as she tries to fall asleep, you feel just that bit better about the world.

If things continue to improve the way they have been in the past few days it may well be that Mojo will be able to take up the nursery place she was due to have at the start of January and some semblance of normality will once again reign in our house. Even if it is a house with sick bowls in every room (including measuring jugs to measure the sick so we know how much fluid to replace!) and we’re up to our elbows in disposable (pah!) syringes.

I know that things are finally getting better and I know that because I’m here and I’m writing this.

I know things are better because for the first time since she was born Mojo has a sodium level is the same as you or I, which is completely down to the extra fluid intake the gtube facilitates. I know things are better because she has put on weight despite all the illness and the vomiting. Primarily I know things are better because I can see it in her face and in her smile.

I also feel, all too keenly, that things could be much, much worse. This winter has been savage for many of our HPE friends with long hospital admissions, terrifying life threatening illnesses and in a few cases life taking illnesses. When I think of those people I feel ashamed that I have effectively whinged for an hour about a chest infection.

Next year we’re off to the Caribbean for the winter and I will post pictures of Mojo sipping mojitos rather then banging on about woe-is-me!

Right…I have a nursery lunch box to buy.

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