It really is a gruelling, arduous, heart breaking time.
There is no more helpless feeling than watching you child literally suffering and you being powerless to fix it.
You're exhausted from worry and lack of sleep, and this impacts your ability to be mum and carer.
Everything that was already a little difficult is now suddenly tenfold.
Basic day to day living goes out of the window - the basic day to day stuff that you already find hard to manage.
Washing accumulates, prescriptions don't get collected, appointments have to be rearranged (even the ones you've waited a long time for!) and so on.
Over a week ago I jinxed it. I said "wow, it's cold today... feels like chest infection season is here already".
What was I thinking.
You see, recently I had shingles.
I wouldn't wish it on my worst enemy.
I had no idea it could be so bad.
For about a week I was one big aching mess, totally debilitating.
Thankfully Amy's dad was able to be off work to cater to hers and my care needs.
I am so grateful and also fortunate that he could be there. I'm not sure what I otherwise would have done.
Part of him being off work was our feeble attempt at keeping Amy safe from catching chickenpox from me.
However I realised that it was most likely inevitable and also probably not too bad for her to catch it now rather than in the future when it can be more dangerous.
So what I initially assumed was Amy catching a cold actually turned out to be the early symptoms of measles.
Amy having a runny nose and fever usually results in a chest infection and before we knew it she was being blue lighted in an ambulance to the local hospital. After some oxygen, a nebuliser, an inhaler, some antibiotics and painkillers and she was stable. Lethargic, but stable.
The next day we were discharged; after all, she didn't need an IV and no longer needed oxygen, I could manage her care from home. Or so I thought.
6 hours later my very pale, sorry for herself Amy went to bed.
Shortly after this her dad heard her choke.
He ran into the room to find her struggling once again to breathe. As he flipped her over to pat her back she turned blue and eventually vomited. Vomit still always comes as a surprise after her fundoplication surgery... but I suppose now we can confirm it definitely has come undone! She was sick twice more and we hurried back to the hospital.
It was like de ja vu. Checking obs, nebs, folding out my little camp bed and so on.
I tend to complain daily about being tired but staying over at hospital is a whole new level of tired. The next day I could barely move.
The climate in those wards seems to change drastically overnight.. one minute I'm gasping for air in what seems to be a sauna, roll onto 3am when suddenly the temperature drops and you find yourself scrambling for extra layers. By 7am you can't believe the layers you have on you and discard them in sweaty disarray, wondering how your hair has tripled in volume over night.
Endless successions of people appear through the door.. checking obs, doing meds, doctors, chewy toast lady (my favourite visitor, I love that weird chewy toast), and then... your friends and family! Its such a relief having close ones around you on those days.
I feel like when you enter the hospital you enter some sort of alternate dimension where time stands still.
For fun you take trips to the water machine, you people watch at every person who walks past your door, or you tidy your very cluttered room. Between this of course is antibiotic poos... oh my.
One night we changed the bedding four times. It's exhausting. The hospital didn't have a bed suitable for Amy and we had to tape cot bumpers everywhere and tie sheets around so that she didn't fall out of bed.
Home away from home is very hard to build when your child has severe athetoid movements. Being in the hospital is an immediate reminder of Amy's traumatic start in life and quite often I can feel my PTSD symptoms and flashbacks returning.
It's a shame to have to see the place where it all happened so often.
Eventually we came home and have since had the observation of our wonderful community nursing team. They offer a bit of reassurance that yes her oxygen levels are fine, her breathing isn't great but they made a plan of 4 hourly inhalers (even through the night!) and are returning again tomorrow to see if we need to go back to hospital.
We haven't been able to feed Amy for a few days and have kept her off school and respite as her chickenpox are still contagious. I am definitely feeling the strain trying to keep up with the washing (she has given me 5 very dirty outfits today, and bedding!) and everything else that needs doing.
I find myself craving normality.
Even though our normal differs from most other peoples' normal, I can't wait for her to smile again, and be able to tolerate her feeds, and to see some colour in her cheeks.
I always feel that she already has so much to contend with that illnesses like colds and chickenpox just shouldn't be allowed.
We missed a lot of appointments since last week, one of them being seating clinic and the other trialling an eye gaze system. I know that we will still get to do those things but I know we'll be trying to squash it in amongst the other things that are planned for that week.
It is so easy to get overwhelmed and feel a bit of a snowball effect taking place. I have a stash of voicemails saved ready for when I decide I have the breathing space to return some phone calls i.e. to sleep clinic, OT and so on.
I often watch the other mums and dads... I wonder if they are like us.. open access patients in and out all of the time.
Or are they like some of our friends who are in even more than us. I feel terrible even complaining when I know lots of people who spend weeks if not months in hospital for each admission.
They must be some of the tiredest but most resilient people out there and I have a lot of respect and admiration for them. Then there's the parents who have maybe never seen a childrens ward before... maybe there child has an illness that will be gone soon but for now needs hospitalisation.
I feel sorry for them too.. this place is so new, and so much is assumed... often it is assumed you know the routine and where things are... it's so easy to get lost or feel isolated and confused.
All of those machines beeping - what could they be. I'm no longer like that, I'm accustomed to the many beeps and what they mean.. I am no stranger to the mute button and the hassle of sats probes.
Hopefully soon Amy will be on the mend and we can return to our normal. I wish you all all of the normality in the world, especially during this cold season!