Saturday, February 22, 2014

Travel Experiences...

How many disabled children do you think have flown interstate before?  A lot you would think, right?  Well it always seems like Lyla is the one and only.  The drama I have experienced trying to book flights, get approval for oxygen and sort out seating options for her is ridiculous! 

Lyla has flown interstate 3 times - Sydney at 12 months old, Melbourne  at 1 1/2 years and then a few days ago to Melbourne at just over 2 years of age.  The first time we travelled I wanted to take Lyla's oxygen with her, I had no idea how she would be on the plane, therefore I wanted it on hand just incase.  We flew with QANTAS and they had a very simple medical form that needed to be filled out, and on the days of travel we had no hassles.  

The second trip we flew with Tiger (rookie mistake) to Melbourne, once again I wanted to take her oxygen, but getting approval was hard.  I sent them a medical certificate which contained everything that the QANTAS medical certificate required eg. Lyla's condition, her symptoms, the oxygen tank size, the oxygen flow she needs if it was required, her carer (me), our travel dates, etc. but it wasn't approved.  I spent hours on the phone trying to sort this out, and I was being really annoying because they were being unreasonable.  Apparently all that was missing was a sentence that said "Lyla is safe to travel from such and such date, until such and such date".  I argued this because the medical certificate was filled out by Lyla's paediatrician, it included our flight details, including travel dates, and it was signed by him.  If she wasn't safe to travel it wouldn't be signed, right?  In the end I told them where to shove it and decided not to take the oxygen.  

And then most recently, Melbourne.  I knew that once a child turns 2 years of age they are required to pay for a seat and sit in it with a lap belt, this would be impossible for Lyla.  So before booking flights, and this was a 'last minute' trip, I called a couple of airlines to see what their seating options were for disabled children.  The options were a specialized CARES restraint, which I knew wouldn't work because of her kyphoscoliosis, limited neck support, tolerance and safety.  The next option was taking a car seat on the plane, and final option was a medical certificate which would have to say why Lyla cannot physically sit because she is disabled and it would be safe for her to travel on my lap, like a child under the age of 2 would do.  This was my preferred option, but I knew I wouldn't have the time to have a certificate filled out, sent off to the airline and approved, all before booking flights.  So car seat it was.  We ended up booking a flight to Melbourne with QANTAS, and back to Adelaide with Virgin.  Before booking, and after booking, I called the airlines to inform them I was taking a car seat in flight for Lyla and I went through all the safety checks with them, but ended up having to switch to an earlier QANTAS flight because the original plane didn't allow car seats.  It was all good...

That was until we arrived at Adelaide airport.  It took about 1 hour to have Lyla's car seat approved at check-in, but we managed to sort it out and had a few minutes spare before boarding.  We were let on the flight first so I could install the car seat.  We were on the very last row and we had all 3 seats in the aisle.  I asked the air hostess if it mattered which seat the car seat was on, to which she replied "You are meant to install the car seat" I said I will but I needed to know which seat it goes on, because it will obviously need an anchor point, she then told me to "Calm down".  My blood was about to boil, I cannot stand people like this.  She walked off in a huff and another air hostess came to help, I explained the situation, my ability to install the car seat myself, and I asked if she knew where the anchor point was.  Turns out they didn't, but an engineer came on and pulled the extension belt out from under the seat, which is what I needed to hook the car seat on to.  Easy. 

The day we left Melbourne, after the orthopaedic appointment, we decided to go to the airport early, have a coffee and look in the stores.  We arrived at the airport 2.5 hours early, and went to check our luggage in straight away.  We were flying Virgin this time.  I told the check in lady we were taking the car seat in flight and once again explained our situation, she said there was a note in the itinerary explaining this, but she was only new, so had not approved a car seat before so called the supervisor to check it.  The supervisor had never seen a car seat being used in flight either.  I had to explain I called Virgin and they suggested to use the car seat and that I went through all the safety checks with them and it was all approved.  After about 45 minutes of trying to work everything out, they ended up calling another lady who came down with a folder with all the safety checks.  They went through the folder for about 20 minutes trying to approve the seat, but apparently Virgin only approve AMERICAN car seats, that have to have a sticker on them saying 'this seat is approved for car and airline travel'.  Our AUSTRALIAN car seats don't say this.  They were at a loss.  I said our other option was a medical certificate so Lyla could sit on my lap, so they decided that was a good option and took us down to the airport doctor.  The wait to see the doctor was 1 hour, which by this stage we didn't have, so we nicely asked the 2 men ahead of us if we could squeeze in first, and they let us!  I go in with Lyla to talk to this doctor, I explained everything that had happened so far with the car seat drama, Lyla's condition and why we needed to see him.  I gave him a couple of medical notes I had in my bag explaining Lyla's condition, he then said "I am not approving Lyla to fly".  What the hell!?  He went on to say because Lyla has scoliosis that affects her lung function, therefore if she was to sit on my lap I would be restricting her lung function even more.  I told him Lyla travelled 6 months prior and sat on my lap, and her scoliosis has not changed since then.  He said it has increases significantly in the past 6 months, which is rubbish.  The only "safe" option for travel was to put Lyla in the car seat, the car seat that is not being approved.  We went back to check in and the lady was shocked and called her supervisor back.  Eventually they decided to call the flight engineers.  3 guys came down and said "Oh yeah, we can install this in to the plane somehow, we will go straight to the captain to get his approval first" (it's the captains choice at the end of the day) and then that was it, it was sorted, but by this stage we only had enough time to go straight to the gate. 

The ladies at Virgin were amazing, very helpful and very apologetic, but it turns out that they have never had anyone use a car seat in flight, except for Americans in international flights, so Lyla was literally the first disabled child to, which I find ridiculous.

Thursday, February 20, 2014

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. 


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.


Friday, February 14, 2014

Feeding Tube Awareness Week...

February 9th - 15th is Feeding Tube Awareness Week, why?  Well, why not celebrate something that helps keep so many people alive? 

Prior to Lyla I didn't know what a feeding tube was, I guess I had no need to.  However, I am sure I would have seen people around with nasogastric tubes, or being fed through syringes before, and I probably looked at them and thought 'what on earth is that?'  Nowadays, I can spot them like a sore thumb, except I look at them and think 'we have one too, I can relate'.  Though they probably think I'm just like the next person looking at them and thinking 'what on earth is that?'. 

I love our feeding tube, we can feed Lyla when and where we want, it's not a fight to get her to 'eat' or drink, we can feed her when she's asleep, we can give her medication easily without a tantrum... Jealous?  Ha Ha! 

Our feeding tube journey started hours after Lyla was born.  She did not require one because she was premature (like many thought), she required one because she could not feed orally, she just didn't know how, she didn't have that newborn rooting reflex.  This we later found out was more than likely due to her brain malformation, something that meant her face and throat muscles were affected, making it very hard to swallow, eat, talk, etc.  The first time I saw Lyla with the nasogastric tube (NG tube) she was about half a day old and it was the first time I was really able to see and hold her, I don't even think I asked anyone what it was, and I probably didn't even care, I was just glad to be able to finally see her.  

I quickly became accustomed to the feeding tube way of life; I had every size syringe known to man and I had enough them, as well as PH tape, Duoderm, Coloplast and Hypafix stock a hospital supply room.  I knew all the terminology, I knew the different types of feeding tubes and I knew the different ways to give a feed.  I was set.  

It took over 8 months of being on the surgical waiting list before Lyla was able to get a permanent feeding tube (Gastrostomy / G-Tube), so by the time it happened she was 19 months old.  It was a date that couldn't come quick enough.  I was sick of the NG tube.  I was sick of ripping it out.  I was sick of Lyla constantly choking, gagging and coughing on it.  I was sick of rushing her to the hospital to get it replaced.  I was sick of having to put her through attempt, after attempt, after attempt of trying to have it put back in.  I was sick of the risk of it being inserted incorrectly.  I was sick of it possibly moving and constantly checking the placement.  

The surgery happened June 2013, it went great!  Straight away we saw a change in her, she wasn't gagging, she was making vocal noises, she let us put a dummy in her mouth and she began to lick food.  8 months on and it is still the best thing we did.  Lyla is fed full time through the G-tube and I have no expectations that she will eat orally, and that's alright.  We give Lyla 5 bolus feeds a day (a feed given over a short period of time) via a syringe if we are out, or an automatic feeding pump if we're home (that frees me up for 20 minutes).  She is on a specialised pre made formula, which looks very much like an iced coffee (and I have to reassure people that I am not giving my 2 year old coffee).  I have been wanting to transition Lyla to a blenderized diet for about a year now, but I keep delaying it for some unknown reason... Maybe I'll start next week ;)  

My first NG tube

My last NG tube - Operation Day

Gastrostomy / PEG

No Tubes!

Current G-Tube / Mic-Key Button


Saturday, February 8, 2014

Photo Update...

I haven't posted any recent photos lately... Here's a few from the last few weeks, while trying to keep cool in this ridiculous weather! 

this is what happens when you leave Dad with a bag of M&Ms and a child!

I have a few videos I will try to add over the next few days.



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.


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!


Sunday, February 2, 2014

Operation Day...

Wednesday January 29th, Lyla was scheduled to have a spinal cast made (you may remember from previous post), along with the spinal cast she would also have a hip cast and botulinum toxin (botox) injections in her biceps. 

Now, the whole lead up to the casting was something I had to prepare myself for, it was a big deal; Lyla was going to be plaster cast 'jacket', as such, it wouldn't be able to come off, she wouldn't be able to have a bath or shower, she would have very limited movement, she would be heavier making it harder for me to carry her with my back issues, it would uncomfortable, it would be something that could possibly hurt her, she would be upset, she would be hot, and with her respiratory issues I was expecting lots of episodes.  As well as preparing myself for the procedure, I also had to prepare her therapies around the casting and botox, which was a hassle because she just received funding from NDIA for specific therapies with specific time frames, etc.  For this Lyla needed intensive occupational therapy sessions to make the most from the injections, cancelling hydro-therapy (water based physio) and transferring that section of funding towards extra 1 on 1 land based physio and adding travel so her therapists could resize home seating equipment, we would have to to order new standing equipment, remeasure and order sleep posture equipment and ordering a specialised bed for her.

Early December I emailed the orthopaedic surgeon with some questions I had regarding the procedure, as well as some questions her physio had.  I didn't hear anything from the surgeon, just a receptionist who told me he was on holidays.  Mid January the receptionist emailed me saying another doctor had read through Lyla's notes and my email and he said "casting was a no".  Obviously this was a shock, so I contacted the receptionist (after many confusing emails) and she told me, the hip casting was a no, but the spinal cast would still go ahead like planned.  A miscommunication on her behalf because 'she didn't understand'.  That was a relief.  

Tuesday, the day before the procedure, I received a call from the rehabilitation department asking if I would like to rebook Lyla's botox because the procedure had been cancelled.  I had no idea what was going on, so I was transferred to the orthopaedic department, where I was told by the receptionist that the procedure had been cancelled, and the surgeon was meant to call on Friday, but obviously hadn't.  

That was too much for me; the frustration, the mental preparation, the lack of communication; I had reached my breaking point .  After hours of calling asking for the surgeon to tell me what was going on, he finally called me back.  He said after reading my email, in which I asked what would happen incase of an emergency and she stopped breathing requiring CPR, he decided the cast would be unsafe for Lyla.  A completely understandable reason, but it made me think he has only JUST read my email, and the fact that I was only told, by another department, a day before it was scheduled was really discouraging.  If it wasn't for rehabilitation calling me, would we have just shown up to the hospital the following morning?

So the plan is another GA where a mould will be taken of Lyla's spine and a brace will be made for her.  The brace is removable, but not as effective as the cast, but if she tolerates the brace a cast can be tried, and then surgery down the track.

In the meantime I have contacted a lady who has worked with a orthopaedic surgeon in Sydney who specialises in infantile scoliosis.  I am hoping to hear from him and hopefully be able to arrange an appointment for a second opinion, I just want to know what we're doing is the best thing for Lyla, or if he thinks there is a better option.