Tuesday, April 3

Home Sweet Home

Oh little home am I glad to be back!

After writing my last post, we ended up back in hospital within hours. Wriggles was refusing all hydration and vomiting medication and syringes of water back up. After a breakthrough with a spoon of runny ice cream, I was convinced we had crack it, but soon this came up with copious amounts of dried blood. As the afternoon wore she grew floppier and more lethargic and I began to panic. Luckily we still had open access after being discharged just hours earlier, and a phone call to a nurse confirmed they were keen to see her. Being a pessimistic sort, I decided to take along some jimjams and spare clothes as well as a washbag. Just In Case.

I was correct. We weren't going anywhere. It was hours later until she took even 10ml of Dioralyte, administered by a brave nurse forcing her mouth open and syringing it in. We managed three more of these; the first fluids in 24 hours. It didn't improve overnight and by the next afternoon, she was fitted with a nasogasteric tube which she promptly vomited out through distress. Eventually a decision was made not to try again forcing a tube down the throat of an orally aversive child documented with a strong gag reflex. A few hours later, with no marked improvement in feeding, and she was prepped ready to have a drip to stave off dehydration. It was a relief to see the liquid trickling in the cannula, to know she was getting treatment she was beginning to desperately need. Now if they could just discharge the girl with the VERY LOUD snoring father, that would be brilliant. I knew I could count on my Wriggles to get her own back on this assault on our ears; she spent the night setting off her sats monitor having de-sat after de-sat until the nurses decided enough was enough and dug out some nasal prongs and turned the oxygen up. 

To cut a long and repetitive story short, we stayed in for 5 days while Wriggles hydrated herself and got a little help in breathing. She developed a terrifying head to toe viral rash, which luckily the doctors were on hand to ensure it was nothing sinister. Although hospital is very lonely and isolating and no fun, it is also quite reassuring and feels very safe. Last night back at home, I set up the airbed in the nursery, not quite willing to place a wall between us just yet. I've also started thinking about maybe getting a sensor pad might alleviate my anxieties when she does get poorly, as I am pretty sure this will not be the last bug we see.

The only small silver linings were (apart from treating myself to Costa coffees at least once a day-a mummy needs her strength up too) we were placed on a ward with another orally aversive child and it helped distract me from thinking "this time last year" all weekend. When we first arrived on ward 1a before being promoted to a cubicle, we were opposite another mama and baby. The other little girl was slightly younger at 16 months and had been born at 34 weeks. She and Wriggles were the same corrected age and same weight, and it was wonderful to talk to another parent struggling every day with oral aversion and apprehensively watching the scales. Interestingly, the paediatric team were much more on her case and regularly had her in hospital for feeding sessions as she also had Cystic Fibrosis. It made me realise that although we have a lot of medical input still and appointments, this is an area which we currently are left relatively to our own devices upon. As long as some nutrition goes in, so far that is satifactory. 

And now we are home. Happy happy times! Even the blizzarding snow outside is not going to get me down. Although, ringing work to impart the good news I cannot come in tomorrow might.

1 comment:

  1. Glad that you are back home Hun. Sorry you had to go through this, must have been scary, it doesn't get easier does it? I have sent you a request on fb as we have just set up a fabby new group for premmie parent bloggers and I so want you to join us xxx