More letter writting

Over the past month, we have found that we are in a really difficult position with our spinal team. We were referred to the most experienced spinal surgeon at The Children's Hospital at Westmead, but he currently cannot perform surgery because he lacks adequate spinal monitoring for the surgeries. We are trying to work through the various possibilities to find an acceptable solution. Hopefully we have enough time and enough options that Madeline's care is not seriously compromised. Our surgeon encouraged us to write some letters to the Minister for Health, as well as to our representatives, so I sent off the following letter along with a photo of Madeline.

______________________________

Dear Minister,

I am the mother of three daughters, two of whom have diastrophic dysplasia, a rare and disabling form of dwarfism. My daughters were all born in Hong Kong but are Australian by descent. In December 2014, we moved back to Sydney from Hong Kong and they are currently treated at The Children's Hospital at Westmead (CHW). 

Many people with diastrophic dysplasia are affected by severe kyphoscoliosis (curvature of the spine) and will require surgery at some stage in their childhood. My daughter's (Madeline) kyphoscoliosis is in the upper thoracic region (between her shoulders) and I've been told it will be an extremely complex surgery requiring the most highly skilled surgeons available. We were referred to Dr Andrew Cree and have been told by other members of the spinal orthopedic team that no other surgeon at CHW has the expertise that we need, and that we would be compromising my daughters' care to see a less experienced surgeon.

When we recently met with Dr Cree, he told me that he is unable continue with my daughters' cases as he currently does not have the requisite staff to provide adequate spinal monitoring during surgery. The doctor who was previously doing the spinal monitoring has resigned so Dr Cree is currently using a consultant. However, this consultant is not experienced enough to handle the complexity of my daughter's case without the very real possibility of causing a spinal cord injury and potentially resulting in permanent paralysis for my daughter. It will take Dr Cree some time to find a suitable replacement and Madeline's surgery possibly cannot wait that long.

Dr Cree has told me that one alternative would be transferring to another doctor at CHW - however, I have previously been told that they do not have the expertise we require, and so I am hesitant to do so. Other alternatives may be seeking treatment in Melbourne, or with our original doctors in Hong Kong - however these are costly and may require significant periods of time away from home and out of school. I asked about the possibility of having the surgery in a private hospital and while this would have more optimal spinal monitoring, Madeline is not yet 10 years old or 30kg, which is a prerequisite for intensive care in the private hospital. I have advised Dr Cree that my preference (and what I believe would be in the best interest of Madeline) is if we remain with him and find some way that he is able to perform the surgery in Westmead with adequate spinal monitoring.

I find it appalling that the most experienced spinal surgeon at one of the most highly respected children's hospitals in Australia would find himself in this predicament. I do not understand all of the bureaucratic policies regarding consultants, but presumably there are other experienced spinal monitoring doctors available, if transferring to another doctor at CHW would solve the problem. Also presumably there are other experienced spinal monitoring doctors available in the private sector, if a private hospital would have been an option if it were not for the issues with intensive care. I urge you to work on a resolution to this issue as soon as possible so that Dr Cree is able to perform the kind of complex spinal surgeries that children like Madeline need in the near future.

For Madeline, this is an urgent matter. Delaying treatment will result in further deformity of her spine placing pressure on her heart and lungs. Without treatment, a spinal cord injury is highly likely, greatly increasing the degree of Madeline’s disability. 

Please do not hesitate to contact me to discuss these issues further,

Yours sincerely,

Nicole

Getting Political part 2

Within a few days of writing my letter to six politicians, I had some kind of response from three of them. My state MP was the first to respond via email, saying that he had written directly to the NSW Minister for Health, The Hon Jillian Skinner MP, to pass along my concerns. I had already written directly to her as well but I was grateful for the support. Next, I received a letter from my federal MP acknowledging my concerns and welcoming us to meet him to discuss them further. Third, I received a phone call from EnableNSW (the organisation that funds wheelchairs) stating that due to my letter to Ms Skinner, our case would be reviewed early and the funds for Madeline's wheelchair had been released. A week later, I received a letter stating that Madeline's wheelchair had been ordered. Apart from this, I did not have any of my questions or concerns addressed. I decided while I was on a roll, I would write again directly to Ms Skinner to ask for a response to my questions and concerns. Here is my letter:

___________________

Dear Minister,

I wrote to you two and a half weeks ago concerning my daughters, Madeline and Briella, who are both affected by diastrophic dysplasia, a debilitating form of dwarfism that leads to mobility impairments. At the time, Madeline looked as though she would be entering kindergarten with no mobility device of her own after months of trials, applications and waiting for funding. Shortly after I wrote to you, I had a call from EnableNSW saying that our wheelchair application had been reviewed early and the funds were now available for Madeline’s wheelchair. Yesterday, I received a letter from Enable NSW saying that the wheelchair has now been ordered. Madeline should have her own wheelchair within weeks.

While I am ecstatic with this result for Madeline, my original questions in my letter to you have not been addressed. Namely, why is mobility currently overlooked in funding for children with disabilities? Why is it acceptable for a child to need to wait a year or longer for a device that will increase his or her independence? Madeline has certainly benefited from the letter I wrote to you, but what of children who do not have someone to speak on their behalf? 

Ultimately, the state will pay for citizens with disabilities – either in disability pensions, or in early intervention. Withholding independence from children will lead to adults who are less independent and therefore more dependent on the state. From an economic point of view, it makes more sense to invest in early intervention in order to enable children with disabilities to grow up to be independent adults who contribute to society and have the capacity to support themselves financially, not relying on disability pensions. 

I would be eager to discuss these issues with you in more detail. 

Yours faithfully,

Nicole 

 ___________________

Today, I received a disappointing response back. 

 

Basically she's saying:

- she regrets any distresses and inconveniences that I have had as a result of raising a child with a disability

- Madeline's wheelchair is ordered

- if I have any other concerns, please talk to someone else. 

Note, she still did not address a single one of my questions - and I highly doubt that the person she referred me to would be able to address these questions either (but maybe I should try?) 

___________________

So where to from here? I have a meeting with my federal MP on Friday and we will see how that goes. Some people who I have talked to have commented that often the voice of one individual is not enough to make change - they recommend that I find and join up with an organisation who has a similar passion for mobility and join my voice to theirs so that together our voice will be louder. I would be interested if anyone has any suggestions or leads as to what to do next. This is a time of change with an election looming, and NDIS starting to be implemented more widely around Australia so if there is ever a time to hope to make a difference, it might as well be now.

Getting Political

It has been a while since I wrote here. I mostly share snippets of our lives on my Facebook page these days. I wanted to share something that is too long for Facebook though.

Since moving back to Australia, I have been slowly navigating the medical system here. Now Australia is a country of high tax and high social welfare but I have noticed discrepancies within that social welfare system that was worth writing to a few politicians about. So I sat down and blurted it all out and sent it off to six different politicians, including state and federal ministers of health, ministers of disability/social services as well as my own electoral representatives. Since it's the longest thing I've written for quite a while, I might as well share it on here as well.

__________________________________

Dear Minister,

Please allow me to introduce myself. My name is Nicole and I am the mother of three daughters; Lana (7), Madeline (5) and Briella (2). My husband and I were living in Hong Kong when they were born and we all are Australian citizens (I was born here, my husband was naturalised in 1988 and my daughters are citizens by descent). My younger two daughters, Madeline and Briella, are both affected by a rare and debilitating form of dwarfism called diastrophic dysplasia. 

Diastrophic dysplasia significantly affects a person’s mobility, although there are other issues associated with this condition. Many people with this condition also have hearing loss (of my children, Madeline’s hearing is unaffected; however, Briella has mild to moderate hearing loss). Despite this, this condition is a physical (rather than mental or cognitive) disability, and people with diastrophic dysplasia have every potential to develop into contributing members of society – provided that they are born into a society which both accepts them and accommodates for their differences.  For example, one man with diastrophic dysplasia in Brazil is a well-recognised geneticist. A Sydney man with this condition was a lawyer. It is my hope and goal that my daughters will grow up to similarly contribute to society. 

Part of the reason for our move back to Australia in December 2014 was the recognition that Australia would be a society in which my daughters would be able to develop best into independent adults. In Hong Kong, we paid relatively less tax but there is minimal social welfare for those who need it. By contrast, in Australia, our tax is much higher but the expectation is that those who need assistance should be able to access funds for their needs. Disability is something which can affect any person or any family at any time and rightly should be funded by taxpayers’ money. 

Upon moving back, I was overwhelmed at the level of support here compared to Hong Kong in many areas. In particular, one area of which I would speak very highly of is the support provided for children with hearing impairments. Briella was diagnosed with mild to moderate hearing loss and was provided with a $3,000 hearing aid within two weeks. In addition, we attend the Royal Institute for Deaf and Blind Children (RIDBC) weekly for individual sessions to assist her to catch up with her language development which was delayed both due to the hearing loss and also due to her cleft palate. She also attends a group session at RIDBC every fortnight where she can interact with other children her age with hearing impairments. For all of this support, we pay virtually nothing at all (all we do pay is a minimal fee to Australian Hearing, which covers all maintenance of and batteries for the hearing aid). If Briella ever damages or loses her hearing aid, it will be replaced at no cost to us. 

 

There is one area of need, however, which I feel is remarkably lacking in support – and that is mobility. Madeline can walk independently; however her legs are extremely short and her joints are restricted, so because of this she is mobility-impaired. Within a room or a house, she is mobile without any assistance; however over a larger area (for example, a trip to the grocery store, or an hour at the mall), she needs the aid of a walking frame so that she can walk independently. The walking frame helps her with stability (she is prone to falls) and it also improves her speed and endurance since she can bear weight on it with her upper body as well. However, even with the aid of a walking frame, she does not have the stamina for a full day on her feet and as such, she also needs a wheelchair for those longer days out (for example, a trip to the zoo). 

When we moved back to Australia, we attempted to begin the process early (in February 2015) to ensure that she would have a device when she enters kindergarten (which would be at the end of this month). It took several months to trial several different wheelchairs and choose which one best fit her needs. We finally submitted the application to EnableNSW in August 2015 (six months after we first began the process), and it was approved quickly, but we were advised that it takes several months for funds to be available for this and that we should not expect to have the wheelchair for about a year.

Given that Madeline needs both a walking frame and a wheelchair, in April 2015 we separately also began the process to get a walking frame for Madeline, and we were told to hire one from the hospital while we were waiting. The walking frame that we have hired is not ideal for Madeline but it is better than nothing. However, by this time, since we had already applied for Madeline’s wheelchair with EnableNSW, we were advised that for her walking frame, our only options were to submit applications for funding with various charities (such as Variety) or to pay for the walking frame ourselves. We are still waiting to hear if our application for funding with Variety is successful or not, but it is looking unlikely that Madeline will have any mobility device of her own when she enters kindergarten at the end of this month.

Comparing the funding available between mobility impairments and hearing impairments, I have to ask why is there no better funding available for children with mobility impairments? Why are children with mobility impairments forced to wait for a year or longer for a device that will increase their independence? Shouldn’t a child in this country be able to enter kindergarten and be able to independently navigate their school campus and field trips?

I suggest that investing in devices for children with mobility impairments is a worthwhile investment. For one, walking frames are significantly cheaper than hearing aids. They are also less likely to be lost or damaged by young children (Briella has already damaged her hearing aid by putting it in her mouth). The amount of independence that they can give to a child is life-changing for them. Mobility is just as important to a child as hearing is, as without mobility a child cannot independently participate with his or her peers at an age-appropriate level. Why is there not better funding for such children?

Briella is not yet walking independently but at age two, she decided of her own accord to take over her sister’s walking frame. With it, she took her first steps. (Sadly, no professional ever suggested to me that it may be beneficial for her to trial a walking frame.) Since she began using her sister’s walking frame, she has grown in both strength and independence. She now will ask for the “walker” and use it to navigate our house. It also allows for her to be in the age-appropriate position - standing upright on her feet. Prior to this hostile takeover, she could not stand independently at all. But now, within a relatively short period of time, she has learned to stand independently for up to a minute or two. If a walking frame had not been available in our home already, she would have been disadvantaged.

My children have the benefit of well-educated parents who push their doctors and therapists for these devices which increase their independence, but what happens to children who don’t have that? They end up being far more disabled than they ever needed to be. They are disabled by a lack of funding and by a system which does not seek to give children the mobility aids that they need. And in turn, these children are more likely to have unequal access to education and less likely to have high career aspirations. This may result in them ending up relying on government pensions for life. Giving children independence at a young age can only benefit them throughout their entire life. I hope that my children succeed at schooling and end up in well-paying jobs so that their taxes can contribute to a system that has helped them when they were young and needed it. 

I write this to you two weeks before Madeline is due to start kindergarten. She will very likely start kindergarten without an appropriate walking frame or wheelchair and as a result, will find it difficult to navigate her school campus. She will not be able to fully participate in field trips or other class events because mobility is not worth funding and it is considered acceptable for a child to wait a year for independence. I find this extremely disappointing and unacceptable and would love to have the opportunity to further discuss these issues with you at your convenience.

Yours faithfully,

Nicole

Like us on Facebook!

Life in Australia is hectic! We have been back for nearly 3 months, have been in our own place for around 2 months, and are coming to the end of the first term of school for the year. Lots is happening medically with Maddy and Briella but yet I haven't found the time to update this blog at all! Instead, I had the brilliant(?) idea to start a blog Facebook page where I can post little snippets of things as they are happening. I think that will be easier for me to stay on top of things. I do still want to share our journey with diastrophic dysplasia but in an achievable way! So please, if you are still following this blog after my months of silence, pop over to Facebook and like us there - the link is https://www.facebook.com/faithhopejoydd

I probably will still post here from time to time if I feel more like writing an essay instead of sharing a quick picture - but it is getting less and less frequent 

Looking forward to seeing you there!

Farewell, my Hong Kong

The title of this post comes from this amazing gift that some special friends got me for a farewell. This group of friends were my mothers group who I met when I was pregnant with Maddy. Some of them, I had met before that 17 week mark, before we knew there were any issues with the pregnancy, before I even started this blog. Before our lives changed. After that moment, for months I wanted nothing to do with this mothers group and their healthy babies and happy lives (particularly when I wasn't certain I would be bringing home a baby at all - and what place does a childless mother have in a mother's group?) but slowly I was able to move past that - particularly as Maddy grew and thrived and I realised that I too had a healthy baby and a happy life.

When I first unwrapped this gift, I thought it was beautiful, very "Hong Kong". It wasn't until I got home later and showed Bernard that I recognised the scene. Man Mo temple, Ladder Street, Hollywood Road, those steps that I walk up at least twice a week to pick up Lana from school. This week when I picked Lana up, I had to take a photo.

Today, we had our last ever appointment at the public hospital. And like that, we're done with the system. I'm glad that we can move on hopefully to greener pastures. But it is a bittersweet change. It's not easy saying goodbye to the place you've lived more than eight years of your life. This is the place I became a mother. When I arrived eight years ago, a 25 year old newlywed with wide eyes and hopes and dreams, I didn't know how this place would change me, would suck me in and become my home. There are times I can't imagine feeling this much at home anywhere else in the world.

But I know that I will - home is where the heart is and when we move, our hearts will move too. We will grow new roots, make new friends, have new experiences - both good and bad - that will continue to mould us and change us. 

Lana said to me the other day, "Sometimes I feel like I have two hearts - a Chinese heart and an English heart. My Chinese heart is at home in Hong Kong and my English heart is at home in Australia". So it is with all of us, I feel. We are at home in two places and never completely home in either. 

In 10 days, the movers will come and most of our belongings will make their way back to Australia. In 14 days, we will be making our way there too. 

A new start, a new chapter.

Farewell, my Hong Kong.

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!