Friday, December 11, 2009
Home Sweet Home!
TB is a cruel illness. Button coughed like an old man on 60 cigarettes a day, his chest rattled as he breathed, he had no appetite and at nearly one year old weighed under 11lbs. He was a very sick little boy. The day after we arrived home we took him to see our GP, who arranged to have him admitted to our local hospital the following Monday. So we had one blissful weekend of normality - well, if waking every hour to check he was still breathing and never letting him out of our arms counts as "normal"!
We arrived in the Paediatric ward of the hospital and met the wonderful Dr G. Little did we know what an important part of our lives this dedicated, caring woman would be. She arranged for a battery of tests, and gave him a thorough examination. immediately she noticed that he had high muscle tone in his right leg, especially his ankle, and that he was seriously behind in his developmental milestones. He could not sit up unaided, and could barely turn from his front to his back. She wanted to be sure of the diagnosis of TB, and to rule out any other serious illnesses (particularly HIV and Cystic Fibrosis).
He had a CT scan of his brain which showed that he'd had a bleed at some point, probably in-utero - he had Cerebral Palsy. That was a dark day - up until then I had managed to convince myself that with the right medication, and some physio Button would be "perfect" - but as she spoke those words to me, I knew our lives were altered forever. I was the proud mama of a special needs child.
Dr G decided that Button's needs could be best served by a more specialised hospital - so after a week we were transferred to Crumlin Children's Hospital, under the care of the Infectious diseases team. It was still vital that the TB was confirmed, and as he'd been on treatment, the normal tests would not work. it was necessary to do a biopsy on one of his lymph nodes. His weight was still a huge concern too, as he was hardly eating or drinking. So a nasogastric tube was inserted. This was the only procedure I left the room for - I had been there for every other needle, examination and blood test, but i just couldn't do this one. When I returned to the room, he was propped up on his pillow, quite calm and relaxed, but I lost it. Now he looked sick.
As I looked at his little face, with those huge brown eyes making fleeting eye contact with me, I thought of all he'd been through to get to this point. And I allowed myself to fall completely, irrevocably and totally in love with him. If ever there was a child who needed someone in his corner, it was Button and if ever there were a set of parents ready to do what was necessary for their child, it was Mr Taz and I.