Home Sweet Home

Dear little blog, 

Sorry for neglecting you. It's that daughter of mine you see. She got sick again. Like all the other times; very very quickly.

Sunday evening she was a bit of a grump with a runny nose. Sunday middle-of-the-night she had a hacking cough that barely gave her time to catch her breath in between. Monday first-thing she was all over the place. Optimistically I secured the first doctors appointment of the day. My GP reached for her telephone and rang an emergency ambulance.

They were so kind, so calm, the two paramedics. Ladies, both with cropped hair probably mid-forties. Not that it matters. They popped Wriggles on my knee, attached four sticky ECG leads pads to her chest and started up oxygen through a mask. 

"I think we just need some speed," one said gently. "Hold on!"

It was so bizarre, speeding through the familiar little streets we walk every day. NEE NAW NEE NAWWW NEE NAWWWWW past the church where we go to music groups NEEE NAWWWE NEE NAWWW past the coffee shops we meet friends at NEEE NAWWW NEE NAWWW past the park NEEE NAWWWWE NEEE NAWWWW why aren't her sats (oxygen saturation levels, measured in %) picking up? NEEEE NAWWWW NEEEE NAWWWWW! 

And then suddenly we were in a&e being quickly guided to bloody 'resus', the resuscitation bays again. The emergenciest bit of accident and emergency. The bit with very scary machines and bits of equipment. The ones that have everything for every occasion because they cannot predict what the patients will do. Back in the same bed as last autumn, the one by the door in the corner. An army of doctors and nurses were waiting for us and immediately swarmed around us, sticking things here, putting things there, fiddling with machines and buttons, barking questions and taking histories at breakneck speed. A chest x-ray was ordered and some poor nurse tried to administer steroids to Wriggles, who by this point was clearly terrified and hysterical. She clung to me like a limpet and would not settle unless I was physically next to her on the bed. So there I stayed. My daughter, the social butterfly, was quite definitely sick if she wanted me. Normally, I am tossed aside for whoever else is in her sight line or has something shinier so this was very unusual.

It seemed hours, but I think it was only an hour or two until we were declared stable enough to travel down the corridor to the paediatric section. There we stayed, in the room adjoining the nurses desk to be closely monitored. Wriggles was still on a lot of oxygen with at least hourly nebulisers and as many drugs as they could persuade her to take spit out. As the day wore on, we were secured a bed on the respiratory ward, wheeled over to the day unit and settled down into a state on not-so emergency. I dared to breathe a sigh of relief, that maybe the drama had passed and we would be in and out in a few days after a blast of oxygen and a course of antibiotics. Maybe, I thought hopefully, we would still make our flight on Friday to join my family in Devon. 

Oh! Someone must have been laughing at me.

Upon getting to Ward 2, the respiratory ward, Wriggles began to crash. She began struggling far worse than when we had arrived, and her machine barely quietened between alarming. Her heart rate was flirting with 200 bpm and her sats were dipping below 80. The oxygen went up. 10 litres and counting. The monitor still alarmed. More doctors swarmed in. Cannulas were placed, blood gases rushed Upstairs. The place that needed no name, no introduction. Upstairs. Ward 12, Paediatric Intensive Care, level 4. Upstairs, my nemesis of nightmares. 
Time ticked on. 11pm. Midnight. Nothing was getting better. A consultant from Upstairs was called to assess her. She agreed to enquire about beds. 
In a daze of horror, I began to pack, so convinced that we were going. By 12:30 I was ready to move again, completely switched off and living on fear. I would not leave the cot, rigidly stuck holding my sick child's hand.
And then my guardian angel, in the form of the respiratory SHO, came and worked some magic. Finally, Wriggles' sats stabilised in the 90s and a sigh of relief was breathed all round. We were on a very fine line, but for now, the acute drama has passed.

The next 24-48 hours was similar: Tuesday night we escaped a similar near-transfer to PICU after being formally accepted there, but thankfully never actually getting around to leaving our ward. In the early hours of Wednesday, I was warned we were on very shaky ground and all it would take was one small wobble and Wriggles would be on a ventilator again. I firmly believe that if we had had a less experienced consultant, we would have ended up on one. Our saving grace was the depth of knowledge and willingness to take risks of our consultant who guided us out the shakiest moments and of the PICU consultant we borrowed who knew Wriggles' history inside out. Wednesday, we had another scare when a coughing fit sent her de-saturated to 64 and in 18 litres of oxygen which took a long time to wean down and Upstairs alerted for the third time. Come Thursday, things began to subside, and slowly more lucid periods began to creep in and litre by litre the oxygen began to come down. 

From then on, it was a long slog, with it taking a further 8 days to manage any time oxygen free. It took days to get her off IVT fluids with a decision being made that we would go home tube-feeding as the consultants suspected intermittent aspiration into her lungs-something that has been considered in varying degrees for over a year. And so here we are, back home at last, with a pump and a NG feeding kit and a date set for a more permanent PEG (gastric) tube being placed. I feel so drained and exhausted, and I suspect it will take a while to process some of the more traumatic moments from the 15 day stay. Wriggles, although outwardly herself once more, has kittens if you dare go near her face or feet, where so many blood tests were performed. She is wary of people, and can spot medical equipment a mile off. If she catches sight of a syringe or spare-NG tube, she screams and hides. As so many have said, it is no surprise she has become so orally aversive. My poor baby: so much, soon soon. So much of her innocence dirtied and her small life tested and tried when it should be pure enjoyment and joy. 

So. A new chapter begins, of tube feeding and investigations by different teams. I have half expected tube feeding for a while, but for dietary and nutritional reasons. Despite the end being the same, it feels a struggle to get used to it although I know it will have many more longer-term benefits. Although it ended up being placed for respiratory safe-guarding, it will help so much as we eventually return to feeding once more.

Little blog, I am tired.

Mouse x

26/52 Some Calm After the Storm

It has been a difficult end to last week. I want to dress it up and put a really positive spin on things, shrug my shoulders and say "hey ho, at least...." but I feel rocky and if I feel rocky, then Wriggles must feel very sorry for herself. She is hedgehog-ing away next to me in bed and my ears are a little bit afraid to sleep in case I don't hear her begin to rasp and wheeze, should it start up again. I'm not a hypochondriac, we have been in hospital. Yes, AGAIN. This cause: the common cold most probably.

It scares me that a cold renders my daughter terribly poorly.

It scares me to see her hooked up to monitors.

It scares me to see her suddenly dependant on oxygen and nebulisers.

I know she is bigger now, stronger, more robust. It's not that I am haunted by bad memories continuously exactly or that every nasal cannula brings me back in an instant to intensive care, be it neonatal or paediatric. But every time you see your child surrounded by tubes, wires and equipment, it chips away a little at your heart with the unfairness of it all. I know that despite the admissions, I do now have a take-home daughter but it doesn't stop the grief seeping back in when I thought it was shut out.

Most parents have the pleasure of seeing their children breathe in and out, wiping noses and bothering the GP. I, with thousands of others, have had the privilege of getting exclusive access to the club of parents who haunt the world of ambulances, spout medical terminology, have open access to hospital and being able to spot respiratory distress and jump on it. Or, try to jump on it only for your efforts to be futile. Best to get to hospital then double quick.

It is moving towards a diagnosis of asthma: although her bouts of respiratory distress are only connected to infections, either viral or bacterial, the fact that her episodes are quite severe when they do happen and respond to bronchodilators are key factors to the doctors. As one said, it could be that her preemie airways are hyper sensitive, it could be reactive airway disease, it could be recurrent RSV infections or it could be infant asthma: at this stage, as long as she responds to treatments when needed, what it is called right now is beside the point but it wouldn't hurt to throw a preventative inhaler of steroids into the mix to see if it helps. I am so glad that there is a plan of sorts forming now. It is a relief to know that both we are being taken seriously now and that people care about what happens to us. It is good to hear medical professionals saying enough is enough, this is getting silly.

As the NHS have been so kind to us, we earned our keep as normal by providing a case study for groups of new medical students. One of the doctors we have come to know well looked very pleased to see us as we ticked multiple boxes to pick the brain of his newest protégées. We patiently sat and recounted back the last 22 months to a circle of scribblers eagerly jotting things down and tried to ignore the sympathy in their eyes. What did slightly surprise me, was that more than one consultant this time was more open than they have been in the past. A lot of time it feels like has been put into persuading me I overthink some aspects which have been laughed off. But this time I finally found out that a) they officially have her down as globally delayed and b) they are still considering aspiration as a cause of respiratory troubles. These sound tiny things in the grand scheme, but somehow it is a relief to hear it in black and white. Global delay does not retract in any way from her progress that she has made and is continuing to make. Although it is a little surprise to hear that we are now getting names for things, it also makes me feel a bit more comfortable that finally we all seem to be on the same page so to speak. And just to prove that doctors don't know everything, we also did a brief class for the medical babies in sign language for small people!

And at last today, after a weekend of feeding my syringe and reliance on inhalers and calpol, it seems we have turned a corner.

Long may it continue.

I prescribe a trip to the park....