This is our son Kai. he was born by emergency c section on the 2nd May 2014 and seemed a perfectly happy and healthy baby until at 5 weeks old. I took him to the doctors concerned about his poor feeding and regular vomiting- within hours of the doctors visit we were admitted to Alder Hey on the 11th June 2014 with my son having heart failure- we soon discovered he had a poorly functioning left ventricle with borderline aortic valve dimension, bicupsid aortic valve aortic valve,hypoplastic arch with tight juxtaductal coarctation with small sized PDA, there was also a large distal muscular Ventricular Septal Defect (Large hole) and small PFO (Hole) along with restrictive ASD (Hole). He was intubated and ventilated requiring inotropes. On the 16th of June he had his first open heart surgery to fix the hypoplastic arch, coarctation, ASD and half the VSD managed to be closed- from transferring from the operating table to a bed ready for the ward after a couple of hours bi-pass Kai went into cardiac arrest and required his chest opening. Once back on the ward and stable Kai had many ups and down including another cardiac arrest at 1.50am on the 22nd June requiring 25 minutes heart massage. Kai failed extubation on 2 attempts so on the 14th of July he had his 2nd lot of open heart surgery requiring bipass to put a flow watch band around his pulmanory artery to restrict blood flow due to his VSD. surgery was successful and on the 16th of July Kai was extubated and has been progressing positively ever since and after 6 weeks and 1 day on ICU we were moved to K2. His band is tightened to 70% and on the 11th august after exactly 2 months we were able to bring him home on no heart medication just an NG tube which will be coming out in a couple of days- he will need further open heart surgery to take the flow watch band off and repair the VSD but until then he is a perfectly healthy looking happy child and I could not be prouder! the staff at alder hey have been amazing x Chanel After a little visit to the a & E last night Kai has been given the all clear.
Posted on: Sat, 30 Aug 2014 14:53:13 +0000
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