Thursday, November 13, 2014

Working towards cleft surgery

Last week on Monday, I took Briella up to the hospital for her pre-op consultation with the anesthetist. Because Briella (and Maddy) are higher risk for anesthesia, there is only one anesthetist in the whole of Hong Kong Island that they would allow to do the surgery. She is great - we've had her since Maddy was born, first met her in the NICU when Maddy was tiny. I trust her and honestly, anesthetists are in many ways the most important people in surgery when it comes to rare kids or kids with difficult airways! The only problem is that this doctor does not do outpatient clinics, so to consult with her, we need to be admitted to the hospital and wait for us to fit us in.

It must have been a busy day for her - we were admitted before 9am, and didn't see anyone for the entire day. At least now, I am prepared for that so we took lots of food and lots of things to do (the hospital doesn't feed the parents so we are on our own!) I did start to get worried when it was getting close to 5pm, so I went back to read what this stage was like with Maddy (I re-read these three posts in particular - first, second, third). Maybe that was a mistake because that was an awful experience!

It was just 5pm and immediately after reading the above posts that a nurse came to talk to me. Mind you, this is after 8 hours at the hospital, in which time we saw no doctor at all. She said "I'm sorry but I'm not sure if the doctor will be coming around tonight. Would you like to take home leave and come back at 9am tomorrow?" I told her "I would NOT like to do that, I have already been here for 8 hours and have not even seen one doctor. My time is valuable as well and I cannot just give up days without even being able to see a doctor at all. I am extremely busy this week and I will need to see the doctor today." I think before, when Maddy was born, I wouldn't have been assertive enough to say that - I would just get upset and angry. Now I am more able to firmly but politely say what I need to say. After about 15 minutes, the nurse came back to me and said "Ok the doctor will come tonight, but I don't know how late it will be". Even staying until late at night seemed preferable than coming back for another full day so I was happy with that. 

A while later, our surgeon came around. I'd seen him recently so he didn't really check Briella out much. He did let me know that they would be trying to book November 21st for her surgery date, but it would be subject to availability. 

It was about 6:30 when the anesthetist showed up. She looked Briella over and gave us the green light. Briella's airways are stable (but still small), her oxygen levels are good, and the MRI of her spine showed no complications for surgery. So with that green light, all that was left was to wait for the call from the hospital.

When I hadn't heard back yesterday (9 days before the potential surgery), I decided to email the doctor. He'd put in all the requests but hadn't heard back yet. With our move coming up quickly, so much is revolving around getting this surgery done. 

As we are renting, we needed to give our landlord 2 months notice - so we already need to vacate our apartment by Christmas eve. The movers are coming on the 20th to pack up all our stuff. We still don't know if we will have Christmas in Hong Kong or Australia, as the surgeon has said we shouldn't travel for around 4 weeks after surgery.

Today the surgeon got back to me and he was able to book the surgery for the 21st, so in 8 days, Briella will be having her cleft repair. I'm not expecting it to be easy or fun - she will have some time afterwards in the PICU which is right across the hall from the NICU and that always brings up bad memories. While she is there, we will have to abide by their ridiculous visiting hours and policies. Hopefully she has no complications and is only there for a minimal amount of time. After that, she will be sent to the pediatric surgical ward for a few days. That also was quite rough with Maddy. Unlike PICU, parents are not only allowed - but they are expected to be there 24/7. Parents are the ones who will do all the care and feeding for their child. That would be fine if parents were catered for, but they are not. There is minimal space and only a plastic chair to sit or sleep on. No blankets or pillows. It's not easy to look after a child recovering from surgery when we are not able to look after ourselves! In addition, after the surgery, Briella will not be able to have a bottle any more. She currently almost always will fall asleep with a feed, and while she's getting better at cup feeding (we practice every day), she's not really ready to give up the bottle completely.

All that said, I do think it's in Briella's best interests to have the surgery now. If we waited to do it in Australia, it could be months later - and the later the surgery is, the more likely it is to have negative impact on her speech.

My mum will be coming next Wednesday to be around for a week and a half while we are in the hospital. Please keep us in your thoughts and prayers over this time. I will continue to update as we go through this :)

(And since I haven't added any pics lately, here are some random pictures from September)

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