BiographyWhen Lola-Rose was born we had no idea of what the next year would bring. Lola was jaundiced like a lot of babies. At 2 weeks old Lola's health visitor arranged for her to be admitted into our local hospital for some blood tests. Two days later we were transferred to Birmingham Children's Hospital where she underwent more tests and scans and it was confirmed she was born with biliary atresia. At 3 weeks old Lola went down to surgery to have a Kasai procedure. After 2 weeks of being in BCH Lola was allowed home, 2 days later she was admitted with cholangitis where she stayed for 10 days.
Six weeks later she was admitted again with cholangitis and again stayed for 10 days of iv antibiotics. Five weeks later another bout of cholangitis resulting in a 14 day stay. It was then decided by BCH she needed to be admitted there for a transplant assessment 4 weeks later.
Whilst In BCH we discovered she had portal hypertension and some small ascites. It was decided she needed to be listed but we could wait 4 weeks in able for her to have some vaccines she would miss out on.
In those 4 weeks Lola's jaundice got a lot worse and her tummy a lot bigger. On 22nd February Lola went active on the transplant list but was also admitted to our local hospital for ascites and increasing liver numbers, the highest they had ever been! Two days later we were blue lighted to BCH. After a few days we were told the seriousness of Lola's condition and how much she was deteriorating, it was decided she would be made a priority and could no longer return home to wait for the call.
Lola had 3 weeks of constant drips and infusions until she finally got her gift of life. It was a long 10 hour surgery in which Lola had a huge bleed and needed 6 litres of blood and the surgeons unfortunately couldn't stop the bleed so they had to pack it and leave her open and hope her body would do it on its own. Two days later Lola was due to go back to theatre to have the packing removed and sewn up but unfortunately she started to have bradycardic moments so there was a huge worry whether she would make it through.
Finally once the packing was taken out Lola was able to be woken up. That night her heart stopped and she needed cpr. More tests and scans were done where she was diagnosed with sick sinus syndrome. When Lola woke up she struggled to breath on her own so was still on the ventilator for 2 week, she was then strong enough to only need airvo and was transferred out of picu and back onto the ward. From there Lola went from strength the strength and after a further 2 weeks was strong enough to come off the airvo completely.
Two weeks later Lola-Rose was finally allowed home!
Unfortunately it only lasted 3 days before she was admitted again for 5 days then again 2 days later.
Since Lola's transplant she has been in and out of hospital and I don't see it changing any time soon.
Before transplant Lola was extremely exhausted and fed up! Now she is full of life and such a happy baby!
|
