Callan
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Callan was born 17th Jan 1998. He was having breathing problems from the start but they just thought that he was traumatized from the birth. He was kept in the special nursery overnight. The next day his condition worsened and was transferred to Sydney Children's Hospital. There it was discovered he had severe subglottic stenosis with an airway of less than 1mm. The tracheostomy was performed and we have had it ever since. He has been a very healthy boy with only a few serious colds (due to chronic overprotection from his mum) and has attended family day care 3 days a week. He is way behind in his speech but rapidly catching up in this area.
He is having his reconstruction finally on 11th Oct 2001 and I have never been so afraid. Hopefully it will be a success but I don't know if I can bear to see my precious boy go through the surgery and recovery. If all goes well however I can learn what it is like to be a "normal mum".
Update - November 19, 2001: Callan's surgery on Oct 11th went well. It was a difficult recovery and a very stressful time for him and for me. I wasn't prepared for the amount of blood he was going to cough up or how much pain he would be in but these things were all normal. He spent 1 day post op in ICU then went to the ward. He didn't bounce back as quickly as I thought he would and was still unwilling to get up out of bed and walk around even though the doctors and nurses all insisted he do so. On the 16th he was very unwell and had developed a large abcess at the surgery site. He was rushed into theatre that night. That was a long difficult day. I knew something was wrong with him but I had trouble getting anyone to listen. Finally someone did and the surgeon was called. The infection had not had time to spread to the graft . He then stayed on IV antibiotics for another 5 days. Allan had a stent in place and still had his trach. We stayed in hospital for 12 days . I was starting to question my sanity in the end. Things were a lot better once we got home only he still seemed so fragile.
On Nov 15th Callan had the stent removed and his surgeon was very pleased with his airway. There was some granulation which was expected and this was lasered. His voice hasn't returned yet due to all the inflammation but Dr Jacobson is very positive about Callan's voice outcome. I was surprised because I expected him to have a very poor voice due to the degree of stenosis. His airway was 1mm still at the time of surgery!
We are looking at trying to remove the trach in a month or so if all goes well. I feel I should be more excited about everything but I'm still shell shocked about everything that's happened lately and even though his airway sounds like it is going to be patent I wont be able to believe the trach will be gone until it is. It has been a long 4 years.
Update - Dec 13, 2001: Callan never regained his voice after the stent removal so there was obviously something wrong. He went in for an endoscope and a huge granuloma was discovered. This was lasered and injected with cortisone. He instantly sounded better and had his voice back. It became easier to manage the trach after that. He needed much less suctioning because now he had a larger airway it all had somewhere else to go other than out the tube. He had always needed a lot of suctioning (12-15 times a day) and now it was down to about 5. This all made for a much nicer Christmas. I was still stressed however because these granulomas can be quite persistent and I spent all of January worrying about that instead of enjoying my holidays. We had another summer trachy style away from wind, water and sand and we live 15 minutes from the beach!
Update - Feb 2, 2002: We had our appointment with Dr. Jacobson (Callan's surgeon) on Jan 29th and he booked us in for 2 days
later (31st) for and endoscope and possible decanulation!
I didn't have much time to get worked up, but I was still very nervous and didn't really believe that the trach would be removed.
I'd been crying whilst waiting for the news and then Dr. Jacobson came out and said it was out and I burst into tears again. Callan did really well, saturating at 100% the whole time in
recovery. Kay our specialist nurse stayed with us which was wonderful. We spent only 1 day in hospital and are now home. His stoma is rapidly closing and we may even get a swim in before the summer is
over. He sleeps fairly quietly, but does snore a little now.
I can't believe we've reached this point. I still burst into tears each time I think of
it. Tears of joy instead of despair for a change. No more suctioning and no more trachy changes and I went shopping with Callan carrying just a handbag and NO trachy gear.
It was a difficult 4 years and partly because I was on my own, but I now regret wishing it away with "if
only". I never felt like I could see the end but it did come.
Now life will be very different for Callan and I.
Thanks for the time and effort you put into this page. It is a huge help to mums like me and it is appreciated.
Update - September 2005: Callan is 7 now and is going really well. The reconstruction surgery has been very successful and he hardly ever gets croup with a cold any more - which was a bit of a problem post trach. No trips to the emergency department in the middle of the night for adrenalin nebs for nearly 18 months now.
His last speech assessment in Feb was fine and he no
longer needs speech therapy. He plays soccer, swims and is learning piano
and loves it. He barely remembers the time when he had the trach. We feel very
fortunate.
