Ffion has been discharged today :-)))
Thank you God!
We are extremely happy to have her home for good and will be breaking open the champagne tonight!
She still has her feeding tube in for backup but has almost all her feeds by bottle now. She has learnt how to pull her tube out so I am having to tape it down really well as we have to go back to the hospital to have it put back in. I had another go at it this morning, but didn't get it done. Went too high this time and tried to poke it up into her brain!! Not surprised she screamed!
She is on 3 different medicines - sodium bicarbonate, trimethroprim and iron. I am making use of her tube to put these down at the moment as she has a tendency to spit them out! Her last creatinine reading was 96 so (hooray!) it has dropped below 100. 100 is a benchmark number according to the consultant as babies with a creatinine level of 100 or lower feed much better and also rarely need dialysis/transplant before the age of 10 which is brilliant :-)
We have a follow up appointment on Friday and the health visitor is coming frequently to weigh her. Putting on weight is the main concern for her now as it is more difficult for renal babies.
I will continue to update the blog but less frequently now, so it gives me a good opportunity to say thank you to all of you who have been following Ffion's progress and thinking and/or praying for us. We are extremely grateful and want you to remember the door is always open in our house to come for a cuppa!
I also need to say a big thank you to Adele, Kenny's cousin, who has been maintaining the blog for us - it has been a brilliant way of keeping in touch with everyone - thank you for all your hard work x
Bring on the sleepless nights!!
Sally x
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