TrachKids.org

Anyway, Greater Glasgow Health board wanted a second opinion on Angus before they make the decision about funding his trip to America. We got an appointment to see Professor Elliot in Great Ormond Street (GOSH), who is the head of the cardiothoracic surgery unit.
 
All my planning ahead made things much smoother and we arrived at the hotel in Cheshunt without a hitch. I hadn't forgotten anything (which is amazing for me) and Angus was totally fine. We did not sleep well. Angus had slept a lot in the car so was full of beans. He went to sleep around 10. I spent a lot of the night lying with my eyes shut, wishing myself asleep. I woke fully at 5am, but stayed in bed until 7. My eyes felt so dry and yucky.
 
We drove to a town called Potter's Bar, from where we could get a train in directly to one of the stations near GOSH. We found a free, unlimited time span disabled space near the station, and then Angus started his adventure. He's never been on a modern train before so he was really excited. Once we got to London, we walked to a park near GOSH and Angus wiled away the time on a swing. He'd let me push him in a swing for hours, but we didn't have that long - so we thought.
 
When we arrived at GOSH, we were told that the Prof was doing an emergency operation. We were put into a room with toys and a multi-sensory unit and we waited about an hour during which time his registrar came to see us and had a look at Angus' fingers and chest. I then asked if we could leave a number with them and go to get some lunch, which was fine. We got the call to return just as we finished lunch - nice timing, huh?
 
 The Prof was very pleasant and had a look at Angus. He’d also waded through all the referral information including the 3D CT scans of his chest and lungs. He agreed that out of all the available options, the lateral thoracic expansion operation was the best one for Angus, and that he thought it would certainly help in the short term. He said he could not say whether Angus would need further surgery in future to enlarge his chest as it depended on how fast it grew relative to the rest of his body and respiratory demands. He promised he would dictate and get a letter sent off to the Board today in support of our cause.
 
Short of him saying he would do the operation himself, this is the best news we could have hoped for. He doesn’t do this particular operation, but would be prepared to learn. However, since England and Scotland work on different health budgets, it might cost the board just as much to send him to Great Ormond Street for treatment as it would to send him to America! Now we wait, yet again, and I will pester them once a week until we get some sort of answer. I am so tempted to send them a montage of Angus so they can see who they are making decisions about. I don’t want them to be able remain completely impersonal. So watch this space yet again. I will be flabbergasted if anything moves quickly from now on, but it would be wonderful to be surprised. The Prof did say that he would mention that the sooner surgery can be done, the better the result as Angus can grow more lung tissue at his age.