Joshua Nayler
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My name is Ginny Nayler. I live in Auckland, New Zealand and have a delightful 16 ˝ month (12 ˝ months corrected age) old son called Joshua who has a tracheostomy. I would like to share his story with you ………
I was pregnant for the first time. It was such a wonderful feeling and my husband Brent and I were especially delighted to find out that at 8 weeks along in my pregnancy that I was pregnant with twins.
My pregnancy appeared to be going fine until the morning of 13th December 2000, when I went into unexpected labor. I managed to hold off delivering for a further 5 days. On Sunday 17th December, Brayden and Joshua were born at 23 weeks and 1 day gestation. Brayden was 675 grams and Joshua was 690 grams (around 1 pound 8 ounces).
Life for our little boys after delivery was not what we had imagined it would be at all! It wasn't at home in our arms all healthy and happy (as it should have been), instead it was in an intensive care unit, with machines, blood transfusions, and medication for this and that. We of course had to adjust to this, our new lives in NICU as this was our daily routine from early morning until late at night - everyday!!
Many weeks went by some were ok, but the majority were bad and unfortunately on 12th February 2001 our darling son Brayden passed away at just 8 weeks old. "A little angel only lent." He is now in peace with no more pain and will remain in our hearts forever.
At this stage Joshua was still intubated on a ventilator, and his oxygen requirement was quite high. The Neonatologists were not optimistic about his future either. The idea of losing both our babies had suddenly become a reality. It was the least to say very terrifying. But we tried to remain strong, I mean we had to. So we could get through the days (it was very hard). We were hoping that Joshua would have the strength to make it through this rough time.
It was probably about 1 week later that Joshua began to make some good progress in terms of good weight gain, no infections and his oxygen requirement had begun to reduce, as you can imagine we were delighted. He appeared to be doing much better.
Joshua had many trials off the ventilator, and out of all these trials off the ventilator, only a few of them were considered to be an 'ideal/optimum extubation trial ie. They were 'planned' trials off ventilation. This was because as Joshua grew bigger and stronger he became more aware of his surroundings and would regularly extubate himself! Each time this happened he wouldn't cope well off ventilation and had to be reintubated.
It became very frustrating for Brent & I, we couldn't understand why he wouldn't last off the ventilator. Each planned time off we both thought this is got to be it. However it never happened and it just didn't make sense. He seemed to be doing so well otherwise. Yet as soon as that ventilator tube came out he would de-saturate.
During one of the failed trials off the ventilator Joshua's stridor was finally detected and the very next day we were in having our first Laryncoscopy & Bronchoscopsy (look down the airway with a fibre optic camera). The diagnosis :- 'Subglotic Stenosis caused by prolonged intubation'. Basically the ventilator tube had caused swelling just above the vocal chords.
It was at this stage that we meet the ENT Surgeon for the first time and he introduced the idea of a tracheostomy to Brent & I. Well, we didn't like the thought of Joshua having to breath through a hole in his neck, it was very frightening? Hadn't our precious little man suffered enough already? We were worried that we wouldn't be able to take care of him? And that he would stand out to be different from other babies. In the end our choice was to leave him ventilated for who knows how long, or to have a Tracheostomy and we could take our baby home in possibly a matter of weeks!
The thought of bringing our baby home was overwhelming and after much soul searching and tears, we decided the best thing for our son was to have the tracheostomy. We were then transferred in early April 2000 from the Neonatal Hospital to the Children's Hospital and Joshua had his trachy operation. We were still very nervous about Joshua having a tracheostomy and seeing him being wheeled away into surgery was very heart wrenching.
The operation went ahead really well and Joshua came out of surgery breathing on his own (no ventilator) and on low flow oxygen only!! It was at that exact moment we knew we had made the right decision.
Joshua recovered well and the next day I was asking questions on how to take care of my baby. Both Brent and I learnt very quickly how to take care of Joshua's trachy (our philosophy was lets learn as fast as we can and take our precious baby home).
We finally came home from hospital on the 24th April 2001 (after a total of 19 weeks in hospital). It was the best day in a very long time! Joshua came home on oxygen 24 hours a day. He also had a NG tube.
We soon adjusted to our new life with our baby at home with his tracheostomy. Being very careful not to get sick we spent most of winter at home inside. Away from colds and flu's. And we did pretty well as Joshua got sick only once with a bout of tonsillitis, which we caught in the early stages and a dose of antibiotics soon got rid of it.
Taking care of Joshua's trachy just became a part of everyday life. It's funny how you just automatically adjust when you have to isn't it? In fact, I found it easier to handle Joshua's trachy than to deal with his feeding problems. Feeding is still an issue now and is only very slowly getting any better.
We are ever so proud of our son, he is truly a miracle to us. He has been through so much in his little life already and yet he has battled on through. Every achievement he makes no matter how big or small makes us so delighted.
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June 2001 Update
A month after we came home we went back to the Children's Hospital for a test off oxygen and it was at this stage that Joshua came off oxygen during the day and only requiring it at night time.
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October 2001 Update
Joshua had his first scheduled L & B and the results were not quite what we expected. What was swelling in the airway had now turned into scar tissue. The subglottis was very narrow about 2.5mm in diameter. The ENT specialist told us that it was very unlikely that Joshua's
trachy would be coming out in April 2002 (as was previously planned). He also told us that he would need significant laryngotracheal reconstruction. Which he wouldn't even consider for Joshua until he was at least 12 kgs
(26.4 lbs).
This was rather unexpected news for us and we were quite taken back. Surgery - we of course wanted to know all about the surgery he would need. However the ENT surgeon only gave us a brief description of what would be involved and told us that we need not worry about it at this time, but we will discuss it in more details at his next L & B in 6 months time (April 2002).
During our hospital stay Joshua was tested off oxygen at night time, and we are happy to say that he no longer requires oxygen at all now.
We also got permission to use the Passy-Muir speaking valve. We don't like calling it his speaking valve (sounds very technical), so we call it his 'purple' (as it is purple in colour). Joshua coped with wearing his purple really well from early on. He can now make bub….bubb…bub noises and …sss.sss….sss… noises, along with other high and low pitched noises as well. We are so proud. The only thing now is that he thinks it's a big game and wants to take the speaking valve off all the time. So we are trying to encourage him to leave it on.
In early July we also removed Joshua's NG tube and went with oral feeding only. However the feeding problems didn't stop there. We then had problems with such things as his volume (not enough), and often not feeding at all, which of course affected his weight gain. It steadily got worse and he was then diagnosed with an oral aversion, and also a hypersensitive tongue. However we persevered and I am happy to say that Joshua did not have his NG tube placed back down again.
His volumes today are still up and down, and the move to solid food was and is very slow. He is eating 'just' enough at the moment to get by in terms of weight gain (very slow). So, getting to the magic weight of 12 kgs for his reconstructive surgery seems along way off in the horizon.
I would just like to say what a great help Aaron's Tracheostomy web site has been to Brent & I. It has helped us to understand more in relation to trachy's. I have also been able to read more information about the surgery Joshua will need. It has really helped us to understand what Joshua may have to go through. Also being able to read other people's stories who have been through similar circumstances has been great, I must admit I have shed many tears in doing so.
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More Photos Click here.
JOSHUA NAYLER - UPDATE JUNE 2005
APRIL 2002
We had our scheduled L&B this month. Joshua's airway was marginally bigger than
it was 6 months prior. The surgeon confirmed again that Joshua will definitely
require re-constructive surgery. He will need to be around 12kgs though before
he would consider surgery. He has scheduled for Joshua to have another L&B in
October this year.
OCTOBER 2002
Joshua started walking in August (20 months). We were so happy as it seemed like
it wasn't ever going to happen. Now it's like he has been walking forever -
funny how you forget sometimes. He is now 22 months old and is into everything!
We managed to keep moderately well during the winter with only a few colds and 1
chest infection. We are very pleased about that.
Joshua had his L&B this month and it was an improvement from the last one 6
months ago. The surgeon was able to pass a 4mm scope this time (last time it was
2.7mm). This is great news, however it doesn't warrant the trachy being able to
come out.
The ENT surgeon said we can now start planning for the re-constructive surgery -
we were really happy to hear this. He has suggested Feb 2003, so that's only 4
months away! Hard to believe really! Joshua is now 10kgs and we are hoping that
he will put on some more weight between now and then.
Please see attached recent photos
January 2003
Joshua's surgery has been scheduled for the 11th February 2003. We have a
meeting with the surgeon next week to discuss the surgery in more detail. In the
end Joshua's surgery was re-scheduled 3 times.
February 2003
Joshua had his reconstructive surgery (Laryngeo Plasty reconstruction) on the
28th Feb 2003. The surgeon took grafts from Joshua's ribs and grafted these into
the front and back (anterior & posterior) of his airway. The surgery took about
5 hours in total. To hold the grafts in place the surgeon placed a plastic
Teflon stent in the airway and then wired a metal Tracheostomy tube into this.
This metal trachy has an inner and an outer. As we cannot move the outer we
regularly take out the inner and clean it (we also have 1 spare-just encase) and
pop it back in.
Joshua came out of surgery ventilated through this metal trachy he had in place.
When he began to wake from the anaesthetic he was very uncomfortable and he kept
trying to pull out the ventilator tubing from his trachy, it was at this stage
the Dr's decided to keep him sedated slightly to make him more comfortable. It
also took sometime to get his pain relief under control. We found it very
upsetting to see him so uncomfortable and in pain. They kept him sedated for
about 2 ˝ days. Once they weaned him off the sedation he began to wake up he was
very sleepy and lethargic.
Once he started to wake up he was able to breathe more on his own, he still
required a little oxygen to help though.
On day 4 post surgery he was weaned from the ventilator and just required a
little oxygen for another couple of days. But unfortunately he developed a chest
infection on day 5 post surgery. They decided to keep him in ICU until this had
cleared up and was put on antibiotics.
On day 8 we finally moved out of ICU and up to the ward. Joshua was a lot better
and had started to get some energy back. On day 9 we were able to take Josh home
for the day and that night. He did very well at home. The following day we took
him back to the hospital for a check-up and he was discharged later that day.
Looking after the metal Tracheostomy was a little different than looking after
the plastic ones. For a start they were very rigid and because Joshua's
protruded out from his neck we had to be careful he didn't catch it or knock it
on anything.
Suctioning it was pretty much the same. However we would have to change the
inner trachy at least 5-6 times a day. We simply would wash it in a warm
solution of water and baking soda.
Because of the angle of the metal trachy each time Joshua coughed the secretions
would travel quite a distance. There wasn't a filter to place over the metal
trachy so I used Bandana's and tied them around his neck to cover the trachy
particularly for going outside in the cold weather and also to catch the
secretions. This worked well and it also stopped people looking (as they do).
Below are some pictures of Joshua's metal trachy:
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July 2003
On the 20th July we took Joshua back to the hospital to have his trachy removed
(the surgeon said it would take 4-5 months for the grafting to heal properly).
In surgery they took out the metal trachy and plastic stent and then observed
the new airway and placed a plastic trachy back in. The airway was good and had
healed nicely.
The next day in PICU we got to take his trachy out for good. It was a big build
up to this moment I tell you! But when it came to actually do it I just pulled
it out and he breathed for the first time through his mouth and nose. It was a
wonderful moment. He was a little frightened at first but after some distraction
he was fine and he didn't look back. He required a little oxygen to stay
saturated for about 24 hours and that was it in a nutshell.
The nurses placed a bandage over his trachy hole and sealed it with some tape.
Within 5 days his trachy whole was closed.
April 2005
Joshua turned 4 in December. And has been attending pre-school for just over 1
year. He has a teacher aid with him for some of the time while attending.
We still have extensive speech therapy and Joshua is not talking properly yet,
but has many words that have become very clear in the past 6 months. He doesn't
use sign-language as much anymore. I think this is because he knows many more
words now. He has just recently started to put 2 words together, which is
wonderful progress.
Joshua also continues to have OT and PT therapy. Although, OT and PT are less of
a concern now that his gross-motor skills have improved significantly.
I must say Joshua is still a very fussy eater! What child isn't I suppose. But I
would say he is a little fussier than the average 4 year old. I expected that
once his trachy was out, that he would eat better. But no, I think it is very
much a premmie thing. Although I will say he does not starve himself.
Joshua now has a delightful 22 month old sister called Casey-Anne. I went full
term with my pregnancy with Casey-Anne, a lovely experience. Casey has helped
with Joshua's speech development as she is learning quickly and I think Joshua
is trying to keep up.
We have our 1st L & B (Laryngoscopy & Broncoscophy) since his trachy has been
out scheduled in the next couple of months.
If anyone has any questions about the surgery Joshua had or about trachy's in
general please send me an email. I would be happy to help.
I would also like to say a big THANK YOU to Aarons Trachy website, this site has
provided me with so much support while Joshua had his Tracheostomy.
If I can offer any support to other parents out there or if you have any questions please feel free to email me.
