Wednesday, October 22, 2014

Maddy's wheelchair test

Today Maddy had her first try of a wheelchair.

To be honest, I had my doubts about whether it was the right time to pursue getting a chair for Maddy, whether it would be beneficial, whether she'd be able to steer it well, whether she'd even like it. Watching her be able to drive herself around, however, all my doubts evaporated and now I am positive that having a chair would be a GREAT thing for her - it would increase her mobility exponentially - and she definitely is ready for it.

Maddy was SO excited by it and kept saying "I love it! I love it! I'll be careful not to run anyone over. It's much faster than walking!" She was careful and deliberate about steering and the joy on her face was unmistakable.

Unfortunately, due to time constraints, we will not be able to pursue this in Hong Kong but I want to make it a top priority as soon as we arrive in Australia. I know realistically it may take some time, but I want to do everything within my power to make sure she has access to this kind of mobility as soon as possible. 

Tuesday, October 14, 2014

Transferring - the medical nitty gritty

It can be a complicated thing to move with kids with special needs. Moving overseas is even more complicated as you change from one medical system to another. Particularly if the country you are moving to has a public health system, moving means going on another often long waiting list. Coordinating things to attempt to have a smooth transition with good continuity of care has been complicated, but I feel we are off to a good start!

When we were deciding to move, one of the first things I knew I had to do was to contact our new hospital in Sydney and attempt to open a file for them. I was very fortunate to be able to get both girls in to the Connective Tissue Dysplasia clinic at Westmead Children's Hospital when we were back in July (given we had to go as "private patients" and pay out of pocket). Now, Hong Kong doesn't have a Connective Tissue or Skeletal Dysplasia clinic, but Westmead does. Run by clinical geneticists, these doctors can help to coordinate and oversee the "big picture" medical care for our kids with dwarfism and other skeletal or connective tissue disorders. This is the department that Prof Sillence was the head of when he graciously visited Maddy in the NICU when she was only four months old. He has since retired and a new doctor has taken over.

One of the things we have had to decide is what we can do in Hong Kong before we go and what we should do in Australia after we get there. On our horizon is Briella's cleft repair, Maddy's spine, potentially more work on Briella's feet - as well as wheelchair assessments for Maddy. I tried to get the kids into see orthopedic doctors at Westmead before our move, as well as getting Briella in to the cleft clinic as well, but with our limited dates and the hospital's waiting lists, we were unable to do so. We do have orthopedic appointments, as well as a cleft appointment for Briella, lined up already at Westmead for shortly after we arrive in Australia early next year. 

We have decided to do all the orthopedic work in Australia - Maddy's spine and Briella's feet. These things are not so urgent or time sensitive and waiting would not be detrimental. While we have had a wheelchair assessment for Maddy and will be doing a "fitting" in two weeks, I don't think we will get the chair here as it is extremely expensive and has no public funding. In Australia we would be eligible for some public funding for a chair making it significantly more affordable. While I would like Maddy to have more independence in distance mobility, I don't think it is an urgent need at this stage. 

We have decided to attempt to do Briella's cleft repair in Hong Kong before we leave. On one hand, I wish we could wait and do it in Australia as it would be more comfortable and supportive to have it done there. I hate the ICU here with a passion, and surgery will definitely mean at least one day, possibly longer, in the ICU. I wasn't particularly fond of the plastic chairs we were meant to sleep on in the surgical ward either (that or the floor - no blankets provided). While we could do the surgery in Australia after we move, it will take some time, possibly months, to organise. After Maddy's surgery was delayed until 22 months and seeing the effect that had on her speech development, I don't want to be delaying surgery for no good medical reason, just because we might all be more comfortable at Westmead. 

Working towards Briella's surgery, we have in the past two weeks had another overnight oxygen monitoring test (which Briella actually slept for this time!) and an MRI of Briella's cervical spine. Both of these tests are meant to show her suitability for general anesthesia. I'm pretty sure she did fine in the oxygen monitoring, and I think the MRI should have been clear but we don't know the results yet. We will see the cleft clinic again on October 24 (Lana's 6th birthday) and hopefully will get a surgery date then.

It is currently hard to plan our exact "moving date" without knowing the surgery date as the surgeons have said they wouldn't recommend flying within about 4 weeks of surgery (usually it is safe earlier than that, but they are being a bit more cautious given Briella's small airways). We would like to move before Christmas, possibly around Dec 22-23, but can only do that if we have a surgery date which is in November. If the surgery is scheduled in December we may need to delay our move until January instead. We can't delay too long, however, as school starts in Australia at the end of January and we'll need to find somewhere to live before then! 

Please pray for us during this time! The good and bad thing about having a blog is that I've been able to go back and read about our experience with Maddy which held soooooo much frustration (if you are interested, her repair was in May '12). I'm at least prepared for it and more knowledgeable this time around - but I've learned that is both a blessing and a curse. As with all surgeries, if Briella has a cold at the last minute, the surgery will be cancelled and then we may need to do it in Australia instead. That wouldn't be so bad - but I'd rather it was done sooner than later... particularly if later meant months later!

Thursday, October 9, 2014

How the Spinal team let us down

I have been debating whether or not to write this down, whether it warrants a formal complaint to the hospital, or whether I should just take a deep breath and move on. I'm going to write it down because it is part of our story, and it has been a source of much dissatisfaction for me in relation to the medical care that Maddy is getting here in Hong Kong.

We have been seeing the Spinal orthopedic team here in Hong Kong for several years, since Maddy first developed scoliosis. It has been my primary medical concern and was one of the main reasons why last year, we wanted to see Dr William Mackenzie in the US for his opinion on how to manage Maddy's scoliosis. Up until our trip to see Dr Mackenzie, I'd had no major complaint with the spinal team here. They were monitoring her, and when I mentioned consulting with Dr Mackenzie, they seemed open to doing so. 

Now due to the early onset of Maddy's scoliosis as well as the location and severity, we almost always see one of the top spinal doctors. These guys are very good doctors - they are professors and are the current and previous heads of the orthopedic department at the largest hospital here in Hong Kong. They are experts in congenital scoliosis and have pioneered some new technologies for treating such conditions. That said, they previously have not treated any patients with diastrophic dysplasia as Maddy is the first case diagnosed in Hong Kong. In my mind, if we were able to get the opinions of two teams, one of whom was a scoliosis specialist and the other who was an expert in diastrophic dysplasia, we would be giving Maddy the best medical care that she could get.

As soon as we came back from the states, however, it was obvious that the spinal team here had absolutely no interest in conversing with Dr Mackenzie on any level. They didn't agree with his opinion, and did not plan on following his recommendations for bracing Maddy's spine. One of their senior doctors told me "There is no point in talking to him as we are not going to change our opinions anyway."

Then there was the matter of the hemivertebra which our doctors insisted that Maddy had and Dr Mackenzie insisted that she did not have. Even when the CT scan proved that Dr Mackenzie was right on this issue and our team here were wrong, they still did not think he was worth consulting with.

In this post, I spoke about my discomfort at being stuck between two opinions where our doctors were refusing to communicate with Dr Mackenzie. I had to learn, however, the uncomfortable truth that ultimately, even though we consulted with Dr Mackenzie (and paid a ridiculous amount of money to do so, I might add!), he was not our doctor and we had no choice but to follow the treatment path recommended by our Hong Kong doctors.

Since we have been talking surgery, Dr Mackenzie's opinion is even more important to me now more than ever. He has done this exact surgery on many diastrophic patients and understands the ways in which their bodies respond which is not typical. I have continued to ask the team to consult with him and one doctor promised to do so.

On our last appointment with them, I asked after that - did they consult with him? What did Dr M say? Did they agree/disagree? I was floored when the doctor told me they hadn't contacted him after all. "We are worldwide experts in congenital scoliosis and we know all the other experts in congenital scoliosis. I haven't even heard of this Dr Mackenzie so why should we consult with him?" I was very upset and told him "You may be experts in congenital scoliosis, but you certainly are NOT experts in diastrophic dysplasia - and Dr M is. He sees hundreds of patients with this condition and you have seen only one. He has done this surgery on many of these patients, and you have done it on none."

It is a very hard place to be in when you have no choices - and I am thankful that we are leaving Hong Kong and so I can say goodbye to this arrogant team of doctors who think they are too "expert" to consult with doctors who may be experts in other areas. It is hard to say what would have been if we had've been able to follow Dr Mackenzie's advice of bracing. It certainly wouldn't have corrected her scoliosis, but it might have slowed the progression or helped with her back pain. Regardless, we are where were are and we have to make the best choices that we can with the options available to us right now.

I am thankful that Maddy's spinal surgery will not be performed by the doctors here. It will be done in Australia instead. While I have not yet met our surgeon there, I have heard good reports about him. I hope that he will be more open to consultation as I hope Dr M will still be able to have some input into our girls' medical care.