Sorry i havent been on in ages! Been a bit busy being in and out of hospital with Rosanna. She got some kind of awful sickness and runny tummy bug on the 16th Feb and had to be admitted to hospital until 28th Feb. She was really poorly and on an iv drip etc. She was discharged from hospital needing oxygen at nights at home so we have that set up and she now has nasal prongs in aswell as the nasal gastric feeding tube. Then we went up to Brompton Hospital in London for her cardiac catheter to close the PDA on the 4/5th March. That went well but has made no difference so they now think the ASD is playing more of a part than they realised so are looking into operating to close that. Also they found she has 'obstructive sleep apneoa' so have put her on a medication to try and help her airways and we have to go back to London for further 2 night sleep study, 1 with oxygen and 1 without to see if any better. If not they might consider removing her tonsils! Also she got awarded the middle rate of DLA but i am re-applying again now as she now needs oxygen etc etc. I don't know it just goes on and on! On a plus note though she is more lively and actually is using her arms and hands now. She has even rolled over twice! and makes so much noise! She is so cute and a really happy baby (unless she is ill). We really are very blessed cos there are so many really really poorly kids at the Royal Brompton with acute heart and lung problems.
Oh hun what a time you have had, but i hope your little girl is feeling much better now. Hope things go well with the sleep study and that they get to the bottom of it, and that you don't have to wait to long for the heart op if that's what's needed. You should definitely look into changing your DLA. As Michelle said it's lovely when they make their little noises and they can be very loud at times.
Oh dear, you have all had a rough time of it lately by the sounds of it, I hope little Rosanna starts to feel much better soon, like Max says you seem to have a great team looking after her. Keep us updated on her progress as much as you can, we are always here xxxxx
Thank you all so much for your messages. It really helps being able to come on here and 'chat' with people who have similar experiences etc. I don't feel alone! Rosie is doing well at the moment and enjoying some time out of hospital lol. We are going back to the Royal Brompton on the 7/8th Apr for our 2 night sleep study. I will let you all know how we get on. As a few of you said its been amazing how much support we have had with Rosie - the only really pain has been keep filling out those blasted DLA forms!!! Its really good they are keeping a close eye on her and doing all they can for her and at least we know what we are dealing with so they should be able to treat it. Thanks again Michelle x