Tuesday, November 25, 2014

Briella's cleft surgery

Last Friday, Briella had her cleft surgery. I was hoping that this surgery could be performed in Australia shortly after our move, but when we knew it could take several months to organise, and when our doctors here were prepared to do the surgery before our move, we decided it was in her best interests to have the surgery done sooner rather than later. Knowing this would mean one (hopefully) last hospitalisation in the public system here in Hong Kong, I was a bit apprehensive but hopefully - for some areas of Briella's care, I've found that (slow) progress has been made in the system since a few years ago. The public system one last time did not fail to disappoint us and as a result, will (actually for the first time) be receiving a formal complaint from us. This is a summary of the last week or so. 

Last Thursday, we were admitted bright and early for Briella's pre-op checks.  The ward has been recently renovated and was more spacious than a few years ago with a decent cupboard for each bed rather than the tiny lockers they used to have. They still only have plastic chairs however, with no bedding provided for parents who are required to stay the night. They also don't have enough curtains for each bed, as it is "against policy" for the curtains to be closed except for if a procedure is being done.

On the cards for the day we needed to have an ear/hearing assessment with the ENT to decide whether or not she needed grommets (ear tubes), then just a quick check with both the surgeon and the anesthetist. The hearing tests were surprisingly good - a few months ago, Briella had fluid in each ear and hearing loss as a result. On Thursday, however, there was no fluid! As a result, when we had the surgery, they did not insert grommets. On one hand, I was thinking maybe they should just as a precaution - but after the cleft repair, the ears should theoretically drain easier - so there was no need adding an unnecessary procedure. 

After a quick check by the surgeon and anesthetist, we were free to go home for the night. Unlike Maddy, they were happy to not draw blood from Briella before the surgery - which I was thankful for as my girls have difficult veins and I didn't see the point in inflicting any unnecessary trauma! Also unlike Maddy, Briella ended up being the last surgery of the day rather than the first (estimated around 1pm). At first, I was concerned about it, but in some ways it ended up being a good thing.

On Friday morning, we were able to feed Briella her breakfast and then one last drink of milk - then she was allowed clear fluids (including apple juice) until 11am. She was actually surprisingly content until 1pm which is when the surgery was meant to begin - so if it had've been on time it would have been a really easy morning! Unfortunately however, they weren't ready for her until closer to 2:30pm and after close to an hour and a half of crying and screaming, Briella had completely crashed.

As Briella was sleeping when they were ready for surgery, I just dropped her off and left - unlike Maddy who I stayed with as they gave her the gas to put her to sleep. I told the anesthetist that we wanted to be there when she woke up and they said ok, and asked us to wait outside in about an hour or so. The surgery was expected to take between 2-3 hours. 

Bernard and I wandered for an hour before going back to wait outside the operating theatre. There is no "waiting room" for parents or carers, only chairs in a busy corridor. We were waiting and waiting, and then at around 5:15 (2 hrs and 45 minutes after I'd dropped off Briella) the surgeon came out. He advised us that the surgery was a success. I asked if we could go and see Briella and he said they were going to be moving her to recovery shortly and they would contact us then, we should just continue to wait where we were. 

This is where it all started to fall apart - it was taking ages and ages, so we were worrying that maybe something was going wrong or taking longer than they expected. Finally, 45 minutes later (around 6pm), we decided we should press the intercom button to ask after her. 

When the ward manager answered the door, we asked him where Briella was. He said "I don't know, she's not here, no one is left on this floor. Maybe they moved her to recovery on the third floor. We have lifts inside so don't need to come out, that's why you didn't see her". For Bernard, that wasn't good enough and he insisted that the ward manager found out exactly where she was and when we could see her. He made a few calls and finally let us know "They already woke her up and moved her to PICU. She's in PICU now". 

We were both very angry and upset. First of all, they had told us we could be there in recovery when she woke up. Not only had they not followed through with this, but they then moved her to PICU without informing us about ANYTHING. Bernard right there and then decided he was going to file a formal complaint so he stayed trying to get names of people involved and why this situation happened. I just wanted to be with Briella so I left to run up to PICU - which is in a completely different building to the operating theatres. 

When Bernard was talking to the ward manager, the ward manager ended up calling the surgeon on his phone and letting Bernard talk to the surgeon directly. The surgeon said he was surprised we were not notified, that this was an isolated incident and that it goes against normal protocols. He also later told us that the reason we were not informed was that their primary concern was getting Briella into PICU as soon as possible so her breathing could be monitored there. 

When I finally arrived at PICU (around 6:15), they would not let me in as they were in the middle of taking blood from Briella. I told them I wanted to be there for it but they would not allow me in until the procedure was over. I was allowed in around 6:30 (she'd probably been awake for an hour or so by that stage) and as soon as Briella saw me, her little face crumpled up and she started sobbing. She had done so much sobbing that day that she didn't even have a voice left. It was one of the most pitiful things I've ever seen...

The whole time in PICU felt like one big fight. They weren't going to let me hold Briella and I told them "she's my daughter, if I want to hold her, I will hold her. I was allowed to hold her sister in the recovery room after her cleft surgery - I don't see why I shouldn't be allowed to hold Briella in PICU now - particularly if she is crying and needs comfort!" I had words with so many of the nurses there - none who were apologetic for their lack of communication and disregard for our wishes - even though they did acknowledge that we should have been informed rather than having to hunt down our daughter. The visiting hours in the PICU are the same as in the NICU - only 12-1pm and 3-8pm. So when Briella fell asleep just before 8pm, we went home for the evening. 

I only told a few people about what happened to us after the surgery - I was so upset about the whole situation that I just didn't want to "go there" again. One of the people I told was a mother of a little boy with special needs, and so much for our situation being an isolated incident, almost the exact same thing happened with her only a few months ago, when her then 7 week old had surgery. It makes me so angry that we are not the only people to have had this experience, and if I know another person with a similar experience there, how many more people has this happened to?  It also makes me mad that all the staff we talked to about it seemed to say it was rare for that to happen. Is it just coincidence that I know possibly the one other person who had the same "isolated incident" as us?

The next morning, there was no way I was going to go until noon without seeing Briella. I just don't think that is healthy for a young child to be isolated after a surgery which is in and of itself, a traumatic experience. They need to have family around, a familiar face, someone who will care if they are sad or need a hug - and from what I've seen of NICU and PICU, it is not the nurses' job to make the kids feel happy, safe and secure. Nurses can never do all that for each child in the hospital. 

Bernard called the hospital around 8:30 on Saturday morning and found out that Briella was stable over night and would probably be transferred to the surgical ward around 2pm. They also reminded him on the phone that we would not be allowed in until noon. That did not stop me from going up to the hospital around 9:30. 

At the PICU, I rang the bell and told them that I felt Briella needed to be with family more than she needed to be there - particularly as we knew she was stable and would be leaving PICU that day anyway. I told them "I will be with her one way or another, either you can let me in, you can transfer her to the surgical ward now, or I will discharge her against medical advice". It again turned into a big conversation with a doctor there in which I accused them of not having the patients' best interests in heart, only caring about their physical needs and not their emotional needs, and placing the convenience of their staff above the needs of the patients. I also told her that I didn't care about their policies, I only cared about the needs of my daughter - and that their policies were wrong and wouldn't be accepted in any other first world country. I also told her that I knew the staff yesterday lied to me when they said that our situation was an isolated incident - and if they would lie to me, how could I trust them with caring for my daughter? It did feel good to get all that off my chest! 

As it was doctors rounds right then, they would not let me in but another very kind nurse told me that Briella was sleeping and calm. She also told me that they would let me in if she was crying at all. With two hours still until visiting hours, I didn't really know what to expect but I did plan to make a nuisance of myself in the mean time! After only about 30 minutes, they invited me in and then transferred her by 11am to the surgical ward.

The surgical ward was not comfortable but it was much better than PICU as someone must be with the child 24 hours a day. After our experience with Maddy, we found that I coped better with the day times and Bernard coped better with the night times so we planned that I would be there for most of Saturday and Bernard would take over in the evening. I found surgical ward to be not too bad - although it's not comfortable and it's impossible to rest there. Even Briella wasn't sleeping well and she was soooo sad looking! We were able to start feeding her fluids and as I knew her discharge would be based on when she was able to drink a certain amount, I made it my main goal to feed her as much as I could. It's not easy as she's not used to drinking without a bottle (although we did start to practice with her a few weeks ago) - and her mouth is hurting too, and she's just generally miserable so not terribly hungry. 

Bernard said the night was rough and uncomfortable and the nurses kept waking Briella up for various though. Neither of them got a lot of rest. I wanted to be at the hospital early on Sunday morning to beg the doctor for home leave (or even mention discharge against medical advice again). When I was on my way up, Briella's IV started to have problems so they took her into a treatment room, kicked Bernard out and got to work attempting to save it. A little while later, they handed her back to Bernard with vomit all over her, drenched with sweat and with a nappy that looked like she'd lost bowel control :( When I think of how much fluids she lost attempting to save an IV that was giving her 20mL of liquid an hour, it makes me mad! By that stage, she was borderline in her fluid intake and I understand them wanting to save the line, but it was removed completely only 7 hours later (140mL later) and the experience probably cost her more fluid than that! Makes me mad... 

The doctor came around not long after I was up there and he initially said that Briella wouldn't be discharged that day - she wasn't taking enough fluid. I asked him for home leave, just for the night, so that we would be able to actually rest. He in turn told me if I could get her to drink 500mL by 6pm, that we could be actually discharged that day! So the race was on...

After the trauma of the IV, Briella wasn't exactly up for drinking anything at all so the morning was pretty tough. By noon, I was thinking we might not make it and we'd need to spend another night in the ward - but in the afternoon we got on a roll and finally got down to needing to get her to drink 50mL in 30 min and we just made it! So we fed like crazy and made it, so were discharged on Sunday evening and have been recovering at home. 

The past couple of days at home have not been terribly easy - Briella is still uncomfortable and is still not feeding great. On top of that, she's pretty congested - some from the surgery and some I think from a little cold that's going around. She's waking a lot more at night and sleeping restlessly - but every day is a step forward. We still don't have our tickets back to Australia yet as the surgeon wants us to wait until the one week check up on Friday before saying when she is fit to fly. We are so glad to have this surgery over and done with and to be on the road to recovery now, and the road to being in Australia and hopefully on to a medical system which doesn't give us as much heartache as the one here!


  1. Thinking of your sweet girl during this rough time. I hope she heals quickly. She's lucky to have such caring, protective parents. Hang in there. You're doing great.

  2. Just to empathise with you. My special needs son spent three weeks in the hospital this summer and was eventually diagnosed with Crohn's. Trying to sleep on those plastic chairs is a nightmare I'll never forget, and not being allowed to shut the curtains meant that the grandma looking after the baby in the cot next to us, walked backwards and forwards in front of us all day.

    I also remember another time when he spent a couple of nights in the hospital when he was much younger. They wanted me to take his temperature every hour, but I really didn't want to disturb him that often, especially as his temperature was obviously not elevated. So I took my own temperature and handed the thermometer to the nurse every time she came back. The problem was that I was freezing cold, so they must have thought he was hypothermic!

    You must be looking forward to getting back to Australia now, and a system with heart!