Ryley Crees
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Our son Ryley was born on the 17th of October 2000. He had a normal full-term delivery. He was breast fed up until the age of 10 months. Ryley contracted croup on the 22nd of May 2001 when he was 7 months old. We were referred to a pediatrician and subsequently spent the next 3 months trying numerous drugs to combat the still present stridor from the croup. Along with the stridor Ryley was also starting to lose weight.
We had our first bronchoscopy on July 3rd 2001, which showed a swollen supro/subglottis region, and we were prescribed oral prednisalone to reduce the stridor. We had our next bronchoscopy on August 1st 2001 when there was still persisting subglottic granulation. We then tried Zantac as well as the prednisalone although neither was helping Ryley.
Our next time in hospital was September 11th 2001 for our 3rd bronchoscopy. The prospect of having a tracheostomy was only ever discussed with our pediatrician the day before and even then it was to be a last resort. Ryley went in for the surgery and about 15 minutes after going into theatre, we received a phone call asking us to come back up from the ward to inform us that it would be necessary to put a tracheostomy in Ryley.
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We both felt our world crumbling. Ryley was only 10 months old, and only just starting to say Mummy and Daddy. We had only recently discovered that we had another baby on the way as well. When we first saw him after the operation with his tracheostomy, it broke our hearts. He was screaming his head off, but there was no sound coming out. That's when it all really hit home just what had happened. Our lives were never going to be the same again.
We spent the next month in hospital learning all about how to care for Ryley. We were so scared and it was all so daunting. It felt safe enough in hospital but how would we go when we got home? I just wanted the problem to go away, for Ryley to be as he was. When we first got home and took Ryley out, we were really conscious of everyone looking at him. It has been almost a year, and even though everyone still stares and asks questions, the tracheostomy has become a part of our lives so much that it is almost now not even an issue. We can't wait until we can take Ryley near the water and the sand in summer, when he has the tracheostomy removed. It's going to be so good when we can join in along with the other parents discussing all of Ryley's yet unspoken new words!!
We had our first bronchoscopy after the tracheostomy was put in on the 24th of April 2002. It was good news. The granulated tissue had reduced significantly and we have been scheduled in for our next bronchoscopy on the 25th of September 2002, where it is hoped that the tracheostomy will be removed. Fingers crossed.
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Update: February, 2003: We were decannulated on Wednesday October 23, 2002. It was the most bizarre thing that we had heard when we were called to the recovery room. As it had only been about an hour since Ryley had left for the operation, we assumed that they had decided to leave the trache in. We could actually hear Ryley crying! I had to look for the trache when I first saw him just to make sure it wasn't there, incase I got my hopes up. It has been 3 months now, and you wouldn't even know that Ryley had ever had a trache. He has forgotten all about it. He has caught up developmentally already. Now he won't stop talking!!!
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