Christopher loves his quilt, it came just at the right time too as he came down with heat stroke that day and he cuddled up with it on the reclining chair, thank you so much to everyone for the hours and dedication this has taken it will be a long treasured part of our family for many years to come xx
Christopher was born blue however I was assured this was congestion.
I repeatedly voiced concerns about his colour, breathing and feeding but it wasn't until nine hours later a doctor came and did new baby checks. The doctor thought he heard a murmur and told me it was probably just a hole in the heart but he would be transferred to a different hospital to check. From there his SATs were checked and he was put into an incubater for transportation.
I discharged myself and his father and I followed the ambulance to the Freeman hospital. Once there we were told he had had an echo and he had transposition of the greater arteries, pulmonary stenosis and ventricular septal defect and they were taking him for a balloon septostomy. He seemed to do well after this and they told us the switch operation would be when he was a little bigger. Fast forward two weeks and we were going home, James and I went to make sure everything was ready but on our return he had been desatting and had been taken to HDU over those two days he kept desatting and going into bradycardia before being taken back to picu. They decided he needed a BT shunt and so took him for surgery, a couple of days later he had a cardiac arrest and was put onto ECHMO. They attempted several times to come off echmo but every time he deteriorated within hours and it had to be turned back on.
They told us they thought he had a problem getting oxygen into his blood from his lungs and that if they were right we had to prepare ourselves that nothing could be done. After taking lung biopsies they found his lungs were fine and so were baffled until they found his shunt had a clot stuck in it, effectively blocking it. Once they changed his shunt he was able to come off echmo but then started to get necrotising entrocolitus and he wasn't losing the fluid from around his body. One morning at 2:34am we were called to sign emergency surgery papers for part of his bowel to be removed and he came back with a colostomy bag. This went very well and he even managed to come off of ventilation to a vapotherm but then he started bradying again and his stoma kept prolapsing. Just four weeks after having the colostomy bag they reversed it and finally all was well a week later we were home in veiw of returning for his full repair.
By this point he was three months old, those months passed by in a sea of medications and appointments until he reached his cardiac check at 8months old after having numerous blue spells. Upon getting there and checking his SATs they found he was only saturating at 42-56% dipping briefly as low as 30% so of course we were admitted. It was then explained an arterial switch couldn't be performed and he would need an operation called the rastelli which meant he would need further ones as he grew. First a bovine valve was tried but this was too big and had to be replaced with a homograft valve. He recovered very well from that operation.
Now Christopher is two years old and hes recently started to have blue spells again so a hospital admission may be near in our future.
He is a relatively happy healthy little boy although he still has the mind of a baby he will smile for everyone and has just learnt to clap. Every week is a sea of appointments, medication and feeds and there's so much more I could go into but it would take too long. He's just learning to crawl and although he gets tired quickly he is doing so well and we are just glad he's here with us to make his life the best we can.