TrachKids.org

So, it's September. Last week I got word that the Americans can come over between the 5-13th December this year. It's much further away than I'd hoped but it's the closest we've come to getting a date for surgery since the start of all this. Why the big delay since funding was approved??

Angus had a cardiology and dietetics appointment today. Neither Gav nor I were worried about them at all. Perhaps we should have been. Angus' pulmonary hypertension has got to its highest ever since his 2nd open heart surgery and is now a cause for concern.

Finally it happened!! We have a decision on Angus' thoracic expansion surgery. The funding has been approved, and it CAN take place in Great Ormond Street. Now we are waiting for a date. This has been such a long journey, and it's not over yet, but this is the first proper, definite decision there has been. It's terrific!!

We, my mother and I, went to see Mamma Mia tonight. I was anticipating a feel good film that would leave me feeling happy and light by the end. Now, I just feel like there's something wrong with me. For those of you who have still to see it, please do.

I suppose it was too much to hope that the letter from the Professor at GOSH would get done and sent the next day as promised. :sigh: I emailed Dr. P at the end of last week to see what he thought and to give him my version of the discussion at the appointment.

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.
 

Angus' actual birthday was on Friday this year. Things were complicated though because he attends one nursery in the morning and the other in the afternoon. The afternoon nursery was closing early on Friday, so he had to have his nursery party on Thursday. Then on Friday he had a party at his morning nursery with a Spiderman cake, crisps, and assorted party bags to hand out. He was full of beans when he came home, regaling me with tales of everything he'd got up to.

Last Friday I took Angus to see the Endocrinologist. He was weighed and measured at this appointment at 82 cm tall and 11.14kg in weight. When he was 3, he weighed 11.7kg and was 81 cm tall. He's going to be 4 on Friday so only growing 1 cm and losing weight the past year is not good. I can understand wanting to keep him hungry to encourage his appetite and oral feeding, but there are other priorities like breathing which are not going to improve without growth.

I took my parents to the airport this morning so they could visit my bro in Europe. It wasn't our local airport, it was the one in Edinburgh and this is a weekend of the Royal Highland Show so the traffic was backed up something horrendous. I thought that the airport traffic was on the outside lane, but I miscalculated and laned up too soon so missed the turning. I couldn't change lanes to turn off because the inner lane was nose to tail.

It's been 6 weeks since Columbus Children's received the referral for Angus to get thoracic expansion surgery. I sent a wee reminder that we were still waiting today and was told yet again that we would get a decision "soon". They hinted that the next message we got from them would be to arrange a visit for testing and consultation - not a walk in the park since it involves a transAtlantic flight, but hey, you do what you have to, right?