Congenital Heart Defects

I've been quiet for a while - things have been rather mental in the last couple of months.

On the 12th November, our little boy was born. Unfortunately there were problems. He was born with a congenital heart defect - Tetralogy of Fallot. We were initially advised of some of the complications back on the 20 week scan, but we were never told just how bad things could get. All we were told was that there would be a surgery or two, but we were not prepared for just how rapidly things could progress.

Immediately after he was born, he was admitted to Yorkhill Childrens Hospital where he remained in the Neonatal unit for four days. After that he was transferred back to our local hospital.

We finally go him home when he was seven days old ... and what a few days we had. Nothing at all prepares you for being a parent.

Things were going great, we had a few checkups with the doctors, and nothing too untoward was happening.

Until early December. He had an exceptionally bad tet spell (basically a significant, prolonged drop in O2 saturation) - this resulted in us rushing him into hospital in a pretty bad shape on the 15th December. On the 16th, he was back up at Yorkhill. Finally, after much waiting, being mucked around, and generally getting stressed, he has his surgery on the 24th December. Not a great Christmas Eve I have to say, but his open heart surgery was successful and he had a (near) full repair (for now). This comprises of a new pulmonary valve, a complete rework of his pulmonary artery, and a VSD (major hole in the heart) closed.

Things were going great (well, as well as they could after our son having major surgery!), but then we had a blow. Complications. Problems with routing of his arteries had caused pressure on his windpipe - causing them to collapse. Even though they had been moved, the damage had been caused. A tracheostomy was performed, and he was put on a ventilator to deliver constant air pressure - ensuring he could breath.

And that was the state of things. We have finally managed to get him moved to a childrens hospital slightly nearer home, but things are still a struggle. My partner and I are having to under go training on how to change a tracheostomy, look after a ventilator, and ultimately, relearn how to look after our son. Things are tough enough, but ultimately not helped by random members of staff in the hospital making life far more awkward than they need to be.

 

Nothing prepares you for having a child with a condition such as this. Equally nothing prepares you for being in a hospital specialising in the care for children.

New software ... again

Moved the blog onto new software tonight ... this blog is now running on a (slightly tweaked) version of BlogEngine.NET :)