( Part of CDH Awareness Month Share your story) Charley Stanfield-Maher chapter 4 By Clair Maher UK Cherubs Co Rep & CPAB member. Charley was out of theatre after 8 1/2 hours apparently they have tried to put a flow watch band on her PA but as they went to close her chest she wasnt tolerating it so she was quickly reopened & a conventional band put on instead which she was happier with. Later I was told what they meant ( she had had a heart attack ) . They left her chest open for a few days and closed it in ICU . During her time in Alder Hey we had issues with drains , they were concerned about her chest continuing to fill with fluid and the drains kept draining. Now Im no medical expert but they couldnt gather why. Me being me ...... When you have a flood , watcher will find its way into any hole space it can? Right? Well if she had a small left lung in a big space surely the fluid would gather and only when the lung grew would it push it out. They said they would give it a try . Sure enough drains were removed and despite a temp spike occasionally and failure to day much she did well. We hadnt bought C anything other than a red woollen hat ( we liked it) & a piglet teddy . I darent buy her anything whilst I was pregnant , I had with the twins 2 of everything then had to return 1 so I wasnt tempting fate. When the nurse told us we could bring over our pram , dress her and take her for a walk around the hospital we were in shock. We had the nurses in stitches with the fact she owned nothing. So we nipped to the shops . 2 weeks later we transferred back to our local hospital and eventually home . Our 1st stop on the way home was to my mums grave :) Feeds were by NG which was removed a few weeks later. Weeks went by and Charley wS doing good with the exception of reflux , it didnt bother her but she would throwback her milk like emptying a bottle ! No one could gather how calm we were or how smiley C was seconds later :) she is still a pro at puking to this day . During my pregnancy and throughout the following months Cherubs had always been there , so when there was a meet up organised we jumped at the chance to meet other Cdh parents and Brenda & Donna . At the time they were Cherubs but have since become Another charity UK only. Everyone was lovely and we posed for pictures and chatted away . We decided that day that raising awareness and supporting Cherubs was something we would throw our selves into. Back home we set about organising a .Charity Ball and other fundraisers We put Charleys story in the paper and a magazine and got on with life. Over the months Charley gained little weight and failed to thrive . We noticed a curve to her spine and it took constant battles to get scoliosis and reflux confirmed . On her 1st birthday we had her Christened , I couldnt think of a better date . She stood holding my hands on the dance floor and we had a beautiful day . Ups & downs over the following year but by the age of 2 she was a cheeky monkey who climbed everywhere , loved to sing Bruno Mars Marry You and everyone loved her . She was older than her years and had an em ensue spiritual sense about her x to keep her scoliosis controlled she wore a body cast and was on meds for her reflux. She loved to eat anything dairy ( despite being intolerant ) what the hell I thought ! She pukes anyway :) lets her let and be happy x Life was finally settled down to a more normal pace x We had known that the band placed on her PA would eventually become too tight and need removing , but said no way would she have it done until after her Birthday. The op was booked for a Monday , pre op the thurs before . All went ok at the pre op but when we got home we received a call. They had a space the following day and could we take her in at 7am . Shoot ( not really my exact word) but we wanted it over with so back the following morning we went. That day our lives were again turned upside down and things would never be the same again :(
Posted on: Tue, 08 Apr 2014 20:14:07 +0000
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