Maybe Surgery?

Since our cleft appointment in November, we have known that Maddy's cleft would be surgically repaired soon. Having our trip back to Australia for Christmas probably delayed and complicated the process a little.

When I heard at the end of November that the surgery would be scheduled for January, I assumed that they would contact me within the next couple of weeks, well before we left for Australia. When it was a week before our departure date, I began to worry, knowing that they couldn't contact me on my mobile phone while we were overseas. I tried calling the hospital but couldn't get through to anyone, and so as a last resort, I emailed Maddy's NICU pediatrician, the only doctor who I have direct contact details for. He kindly looked into the issue for me.

On the day that left Hong Kong, he responded, much to my disappointment "The chief surgeon preferred to wait until Maddy's next follow up (Feb 2012) to schedule the surgery, not before that. They would usually contact the patient one week beforehand, and he said there is no urgency for Maddy."

I was disappointed to hear of the delay as the private ENT that we saw told us that for the sake of Maddy's hearing, ear tubes should be placed ASAP, and when we had our most recent cleft appointment, the doctors there agreed with his assessment and decided that it was in Maddy's best interest to perform the surgery (which would be mainly for the cleft palate, but ear tubes would be placed in the same surgery) as soon as possible. I felt that their position had changed, and I was not consulted or even informed.

I do believe that Maddy has some hearing loss associated with fluid in her ears which cannot be corrected until after this surgery. Her speech is delayed, and this age is so important to language development. If Maddy's hearing and associated speech issues are addressed now, she can still catch up. Every month that the surgery is delayed increases how much catching up she will need to do. (Maybe I'm being overly paranoid about this issue, I don't know. This is a major concern for me, however it does not seem to be a major concern for the doctors...)

I expressed my disappointment to Maddy's pediatrician (who has nothing to do with the cleft team) and asked him if he could provide me with contact details of the chief surgeon so I could discuss the issues with them directly. He told me he could only provide me with those details with the consent of the chief surgeon. We exchanged a few emails, but I never heard back from the last one before Christmas (possibly he was on holidays, I don't know the reason)...

Anyway - last Friday afternoon, I was out with some friends and had a missed call on my phone. They left a rather long message, all in Chinese, and while I couldn't understand the entire message, I knew that it was the hospital scheduling an appointment for Maddy. I had a gut feeling that it was about surgery, but had to wait for Bernard to get home so he could translate the message for me.

When he got home, all that the message said was that we had an appointment with a particular doctor (of which the specialty was not mentioned) at 9am on Monday morning, and if we had any questions, we could call a certain number within business hours. Too bad that by that time, there were no more "business hours" before our appointment!!

I showed up at the appointed place and time this morning to find out that Maddy was being admitted to the surgical ward for her preoperative assessment. And so it is currently 4:20pm, we have been hanging around the hospital for nearly 8 hours and have yet to see a doctor. We're both cranky and tired, but hopefully we will find out soon when surgery will be. As annoyed as I am about the whole situation, I want the surgery to be done ASAP so I'm tolerating the inconvenience...

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I wrote the above at the hospital but couldn't post it due to not having wireless there. Instead of editing the last paragraph (I'm tired after a huge day!), I'm just adding onto the end here...

The cleft doctor ended up coming around at 5:45, by which time we had been at the hospital for nine hours!! The doctor we saw was not the one we had an appointment with - the one we had an appointment with was on leave today, presumably sick. I was annoyed about having to wait the entire day to see him - I might as well have shown up to the hospital at 5 instead of 9. As far as cleft is concerned, they are ready to proceed with the surgery provided that they get the OK from both ENT and anesthesiology. 

Tomorrow morning, we have our next orthopedic appointment and physio at another hospital, and then I have to go back to the hospital we were at today to see ENT and anesthesiology. The concern there is again with Maddy's airways being small, she is more risky to intubate - and she needs to be intubated for surgery. If the ENT and anesthetist are convinced that she can safely be anesthetised, then we will proceed with the surgery. We will only have maybe one week's notice on the surgery date, but they need to book a PICU bed for Maddy, so if PICU happens to be full on the surgery date, Maddy's surgery will be cancelled at the last minute. 

All in all, it looks like surgery will be in the next few weeks, pending approval from the other doctors. We won't have much notice and will need to be prepared for it to be possibly cancelled at the last minute. Kind of annoying, but I understand why it's done like that...

I can't wait for the surgery to be over, I think that I'm the most tense (with regard to Maddy's health) than I have been since the NICU days. Hospital is not fun at all...

(the sign they made for Maddy cracked me up ;) )