A Desperate Trip...

I'm sitting here this morning, with Lyla, doing our usual routine before we start our day, which involves watching ABC4KIDS while having 'our' morning coffee... Nothing exciting, but I like to start our day quietly and relaxing-ly (that's definitely a word).  Today is the day after yesterday, and yesterday was the day we had our worst fears reconfirmed, it was an emotionally draining day. 

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A little while ago a very good friend of mine told me about a lady and her son, she saw on one of those morning TV shows.  This mum was on the show talking about her son, who had some major health issues (one being scoliosis) and she was doing all she could to help him, while studying to become a doctor and medical researcher, and she was currently doing her Masters of Science in scoliosis.  Straight away I found her on Facebook and told her about Lyla, and then just as quick, she got back to me with all this information and all these contacts.  With her help, we were trying to book some last minute appointments to see 2 of the best orthopaedic specialists, one in Sydney and one in Melbourne. 

Two weeks ago she messaged me to say we managed to get an appointment with the Melbourne specialist.  I was so excited, we were finally going to get a second opinion and we were finally going to see someone who could fix her, just what we needed after the stuff around with Lyla's scheduled casting, and just in time because the week later at Lyla's normal orthopaedic appointment, her specialist said he no longer knows what to do for Lyla.

Two days ago myself, my mum and Daniel's mum went to Melbourne, the big appointment was the following day, so in the meantime we walked around Melbourne and caught up with friends and family for dinner and breakfast.  Yesterday we caught the tram to the specialist's office; we were only able to get a half hour appointment, but that was better than nothing, or waiting a few months to get a longer one.  He was a lovely guy, we talked a bit about Lyla's condition and he had a quick look over her, then we sat there, in silence, but his face said it all... Dan's mum broke the silence and asked 'Do you have the miracle cure?', he looked at us and said 'No'.  He went on to explain every treatment that is available to help treat scoliosis, and a million reasons why every single one of those will not help Lyla, why they would do more harm than good.  She is too small, she is too weak, she has no diagnosis, she has no prognosis, her hips are dislocated, her back is too severe, she has respiratory problems... The list went on, and on.  Her body is broken and there is nothing that can be done to fix it.  I made it through he first 20 minutes before it broke me.  As parents we do everything we can to help our children, and that's what we've done, but to be told again that there is no safe alternative to help save your child's life is too much for anyone, no matter how many times you've heard it, and we've heard it a few.  Our only option is to continue going on with our lives and giving Lyla the best one possible.  

I knew this was going to be the case, but I didn't want to focus on that, I wanted the miracle cure.  I didn't want her tiny body to be too broken to fix.  After everything she has gone through and everyone she has proved wrong, I don't want this to be it.  But every day, every month her back will continue to curve.  Every degree decreases her lung function even more.  Every degree causes more heart problems.  How far can it go?  How long will it take?  Is she going to suffer?

As heartbreaking as the appointment was, I am very glad we went.  He said if he had the miracle, he would fix Lyla.  But if he can't help us in the way we hoped, he is going to help us in other ways.  He is going to contact neurologists to look at Lyla's brain scans to help us find a diagnosis.  After the appointment we walked to Melbourne's Royal Children's Hospital, not usually somewhere I would choose to go to hang out, but that's where we went and it was beautiful.  We looked at the fish and sharks in the aquarium, we looked at the meerkats, and we had ice-cream, the specialists recommendation.  Then we went home, to where we will continue on with our lives, enjoying our daughter, giving her all the experiences she can have, doing all the things she loves to do, and never taking any day for granted.  Her fate may now be sealed, but her fight is not over.

Jess

Neurology...

Yesterday Lyla had an appointment with her neurologist, Nick Smith, at the Women's and Children's Hospital.  It was a pretty standard appointment, he was really impressed with Lyla's growth and development and he was excited to see Lyla was so happy and smiley.

I mentioned some of my concerns regarding her breathing episodes and how they have started to reappear quite bad, often causing her to pass out afterwards (there was a period of time where she was having very few episodes, or if she did have one she wasn't struggling to catch her breath as much, therefore not going as blue).  He thought it could possibly be due to low iron levels, which if the case makes sense because around the same time they were not as severe I was giving her extra iron.  He suggested to test her iron levels and a few other bits and pieces with a blood test.  

Along with that I mentioned the tachycardia spells she has (rapid heartbeat) with an episode, and when she was in PICU after her gastrostomy surgery the heart rate monitor was reaching 250 BPM!  He referred us to cardiology again to have an ECG to check her heart out.  I was hoping he would.  He also referred us back to respiratory (happy about that too), the only time we saw respiratory was when Lyla was 7 weeks old and spent the week in PICU.  I always found that strange because she obviously has respiratory problems.  He will also recommend a swallow study to see where everything goes when she swallows.  This was something we have had booked a couple of times, but it was always cancelled.

So I'm really happy that we're re-seeing a couple more departments, this was we will also know if the scoliosis is damaging her heart and possibly contributing to these issues.

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After the appointment I had a few other errands to do at the hospital; we went to the HENS department (home enteral nutrition service) they showed me how to change Lyla's Mic-Key button, so I changed it by myself and now I have a back up one so I can do it at home next time.  We picked up some medical supplies and paid a pile of outstanding invoices (whoops).  I also filled out paperwork to request a copy of all her medical notes (there's A LOT of them) and put in a request for a DVD of her spinal x-rays for our upcoming orthopaedic appointment in MELBOURNE - Feb 19th!!

 We're seeing Australia's #1 orthopaedic surgeon!

Jess

Scoliosis Check-Up, Part 2

Yesterday Lyla had her 1 month orthopaedic follow up, at the Women's & Children's Hospital, for more x-rays and I guess a bit more of an idea / plan with the MRI and surgery on her spine.  

We started off with having several x-rays done with the doctor as he wanted us to pull and stretch her out as much as possible so he could see the amount of flexibility she has in her spine; this turned out to be very unsuccessful, as he told me afterwards, but I knew that anyways as she was upset, therefore tensing and not relaxing.  After this traumatic experience we headed back down to clinic where I was expecting to be told the big plan with the surgery, something I had prepared myself for over the last month.  Well, things apparently changed...  Dr. Selby (orthopaedic surgeon) came in and said 'I'm going to put her in a cast'.  Huh?  What?  It seems Lyla is still too small for surgery and the nuts and bolts don't come in little baby Lyla size, and she may not have another year or two to leave things how they are until she is big enough.  

As I mentioned in the last post about this degree of curvature causing lung and heart problems.  Leaving her spine as it is until she is big enough could, and possibly will, kill her; her lungs will not grow and develop.  

So she will be having a cast called a Risser Cast put on to control, not correct, her spine until she is big enough for surgery; he suggested this last year, but due to all the other health issues she was having it was not a good idea.  At the same time, she may be having her hips cast as they have always been dislocated, but he will discuss this with her other orthopaedic doctor, Dr. Allcock.  The casting is done under a general anaesthetic, so I filled in admission papers yesterday and it is scheduled for January 29th, 2014.  He still wants the MRI, so that will be done under the same GA.  The cast only comes off for re-sizing and will remain on for 4-6 months!

I've tried to research Risser Casting, but I can't find a whole lot of information on it, as it is an older style of casting.  I've read it goes under the armpits down to the hips, but I've also read it goes over the shoulders to the neck and sometimes past the hips.  I think the thought of her being in pretty much a full body cast (hips casted too if they decide to fix the hip dysplasia) is harder for me to accept than the surgery.  I've had so many questions pop into my head since the appointment - the worst I keep thinking is what if something happens to her and she needs CPR?  

Jess

I Didn't Choose The Scoliosis Life, The Scoliosis Life Chose Me...

To start, and I have probably mentioned in previous posts, Lyla has scoliosis - a right curve with associated kyphosis (curve protruding from her back) 

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Back in September 2012, Lyla had an orthopaedic appointment for a spinal check-up and x-ray; at that stage Lyla's spine had curved to about 70º+ in the space of 10 months, so it was quite a severe and progressive curvature.  At that September appointment the specialist told me (as we discussed this at a previous appointment) a spinal brace would not help Lyla - 1. because it is very constrictive and will not help her already bad breathing issues, and 2. her spine will more than likely return to this position over time.  He breifly mentioned surgery, but said she was too young so all they can do for the time being was to monitor it and return in a year.

So fast forward to last Friday when we had the follow up orthopaedic appointment.  We had a 9am appointment at the Women's and Children's Hospital - 9am is not usually a time we are up and in the city by, but the good thing about the early appointment was a semi empty clinic, therefore we did not have to wait the normal 2 - 2.5 hours to see the specialist... Anyways, straight away Lyla went to have an x-ray, this is a somewhat traumatic experience for Lyla, she is not normally awake at 9am, but here she was naked, on a cold table being pinned down and stretched by a stranger.  I try to make all these things as happy or as enjoyable as possible by doing all her favourite things, like explaining everything we are doing; 'one arm out, two arms out, boof out' as I take her shirt off, and 'arms up, up, up' as the radiologist tries to force her arms up in an un-natural position for her; none of this actually helps, but I guess it makes me feel better knowing I am doing what I can to try and make her feel better.

I got the x-ray image straight away and headed back down to the clinic, I thought I would take a quick peek at the x-ray as I waited for the lift, my heart sank as I started to pull it out and I saw all her little ribs squished and the curve of her spine.  I knew her back had worsened, but I don't think I was expecting it to look quite as bad as it did.  We waited about 30 minutes to see her specialist, he came in and measured the curve on her x-ray and he said it has reached and slight passed the 100º mark - 100 degrees!? 100 degrees!?  I remember the last time I saw him he said, "Once a curve reaches 90º people start to have lung and heart issues", Lyla is now at 100º what does this mean?  I asked if he has seen this degree of scoliosis on someone before, he said he has, its very rare but he has seen it with older people, and that it is very, very rare for someone Lyla's age to have this severity.

He checked Lyla out and did all the usual things, he said she still has some flexibility in her spine which is good, he also said her spine is rotating and we're now stuck in between a rock and a hard place and she needs something done as soon as possible, and surgery is the only option... Surgery was something we didn't want to do, especially when Lyla was younger, because her future was so unknown we didn't want to put her through surgeries just for the sake of it, but if that's the only option we have, we have no choice... The specialist said the plan is to return in 1 month for some more x-rays and then he wants her to have an MRI (under anaesthetic).  Lyla is having an anaesthetic in January for botox in her arms, so I asked if he could contact her rehabilitation doctor to combine them, which he did, but he wants it done sooner, so he'll try push the botox forward.  And after all of that, surgery.  He said because Lyla is so small and still growing, surgery will need to be performed every 6 months to replace the rods.  Apparently there are some other, newer options, but he is unsure if they're available in Australia, or if they're available in her size.

this is her x-ray from last week

This is a comparison - image on left is most recent October 2013 - 100º

image on right is September 2012 - 70º

Jess