Stuck

I've been avoiding writing this post for a few days now. I was so hoping that at our appointment on Tuesday that the doctor would approve our plans to travel back to Australia. A couple of months ago when Maddy was discharged, he told us to not travel for a couple of months. Since then, the ENT said that Maddy would most probably handle being in a plane. In addition, her breathing is getting better and better all the time - she rarely has the stridor any more now. But it wasn't to be - the doctor told us that we should put our plans to travel on hold for another 3-6 months at least.

Disappointed doesn't even really begin to describe what Bernard and I are feeling at the moment. You see, last Easter we were planning to go to the US but had to cancel it because of my "high risk pregnancy". We thought of going to Australia in the pregnancy instead but it didn't work out. Since Maddy was born, we were initially wanting to go back in October for Lana's birthday, and then after Christmas and into January, and more recently we were starting to think about March, but each time it has fallen through. We haven't had a good break for over a year. Bernard hasn't been back home for over two years. Lana and I haven't been back for eighteen months - last time we were back, she wasn't even walking yet!!

The doctor admitted that chances were that Maddy would most likely cope well with being on a plane - but since they know she has had airway issues, IF there were any complications on the flight, her airway could completely close up and there is absolutely nothing they could do for her on a plane. Oxygen wouldn't help because it wouldn't be able to get into her lungs anyway. It could be a life and death situation. So he advises that it is better to wait a couple more months and then possibly repeat the CT scan to reassess her airway and keep our plans to travel on hold until then. He also advised that we should probably do a couple of short-haul flights before we go back to Australia (a nine hour flight) as well.

I've already had six months experience with this doctor and we have butted heads a bit over the time. I haven't always agreed with his management of Maddy's care when she was in NICU. I still believe that she could have and should have come home between two weeks to a month old and IF she had any problems after that, we could have brought her back. This particular doctor is VERY cautious and conservative. I asked him on Tuesday "If we had another child with DD with similar symptoms to Maddy, how would your care of that patient be different now that you have learnt more about the condition from Maddy?" and his response? "It would practically be identical. There may be a chance that if the feeding went well, we may let the child home slightly earlier if the parents were CPR trained, but there is very little we would do differently." It really makes me think that if we DID have another baby who also happened to have DD, I would prefer to just move back to Australia. I think that the NICU situation there would be much more to my liking, and I'd rather be stranded there than here as well if we were unable to fly!

It is so frustrating to be stuck here, and this issue really brings back a lot of my frustrations with NICU as well. When Maddy was in NICU, it felt like her release just kept getting pushed back later and later. There were times when it felt like there was never any plan to release her. And each time that this doctor tells us "Wait another couple of months to fly", it feels like he'll probably NEVER say she can fly. 

In the meantime, we have SO much time off that Bernard can take (over 7 weeks) - and so little that we can do with it. There are not that many places you can go to from Hong Kong that don't require flying. We have already been to Macau and we spent a couple of days at Disneyland too. We could go to some places in China, but the places that are close to Hong Kong may not be so clean and child-friendly. There are no cruises that depart and land in Hong Kong - but we could possibly do two cruises back to back - say one from HK to Singapore and another one back to HK.

Being stuck here is really hard for both Bernard and I. And for me, it makes me realise more and more that Hong Kong is not "home" for me. I do like it here and we have made some wonderful friends here (some of who have already moved back to their homes, and others who are leaving HK shortly). If it was completely up to me (and it's not), on some days (but not every day), I would love to just call it quits here and move back to where I DO call home. But that plan is not in our immediate future at the moment.

We have another appointment on June 2 with the respiratory team, including the ENT, the pulmonologist and a couple of other doctors that I can't remember right now. I can and will ask them again about flying then - but my past experience with them says they will likely just defer that decision to our neonatologist. Our next appointment with him isn't until July 12. So chances are, we may not be going anywhere before Maddy turns one.