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

Jess

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.

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.

...

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

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.

Jess

Team Lyla

Back in September some of our friends decided to run in Adelaide's City To Bay Fun Run, but they decided to do it for a reason - Lyla.  They went on to create a Facebook Page dedicated to the event and Lyla, they registered a team, had t-shirts printed, held a fitness preparation group and spread the word in hopes to raise some awareness, as well as raise funds for Lyla's care.

September 12th came and we had a team of about 40 committed to tackle the 6km and 12km walk or run from Adelaide to Glenelg.  It was a great day, the weather, which looked very miserable in the morning, came through.  We set up a Team Lyla hub at the finish point where some of my family were waiting with a sausage sizzle, fruit and drinks.  We were even visited by South Australian's Premier - Jay Weatherill!

The whole event was a huge success.  On the day we had set up a little money tin for anyone who wants to donate loose change, but we ended up with around $400 in there.  The guys who organised set up a donations link, which raised $2,900 and just before Christmas Lyla received a letter from the Premier which included a $500 cheque for her.

THANK YOU  

to everyone who was involved in anyway, you made a huge difference in Lyla's life, and it is amazing to know she has so much love and support out there.

Jess

Yo Ho Let's Go - Captain Lyla's 2nd Birthday!

Sunday November 24th we hit a new milestone, one, two year ago, we never expected to see...

Lyla's 2nd Birthday! 

Her first birthday we celebrate in Wonderland, with an Alice in Wonderland themed birthday; this year we celebrated in Neverland with a Jake and The Neverland Pirates themed party - one of her favourite cartoons.

I am a huge fan of arts and crafts (ha ha goober) so this is my one time to shine and go OTT.  I think that's very important, Lyla's life (and anyone's for that matter) is very precious and I want to celebrate every milestone, no matter how insignificant they may seem to some and every birthday, because we really don't know how many we'll have... We're hoping for a lot!  So why not splash out and have a huge party to celebrate Lyla? 

We had our closest friends and family and Lyla's friends over (though some had to pull out last minute due to sickness and this bloody stomach bug going around at the moment), but it was a great day, and Lyla was spoilt rotten!

Here are some pictures from the day...

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