We have an exciting new update to share on the blog, and
we ask for your prayers in the upcoming months for our Malachi! To better
explain the situation, we will start with a very short history of Malachi's
breathing support needs and tracheostomy tube.
Our happy three!
On November 11, 2016, our triplets were
born at 25 weeks and 2 days. Due to their prematurity, they were on breathing
support (ventilators) for months. Malachi's lungs ended up being the worst, for
no specific reason. He had many difficulties and setbacks and life-threatening
moments.
On March 31st, 2017, Malachi had his tracheostomy tube
surgery. The reason for the trach tube was to better be able to ventilate
Malachi, since his lungs were so damaged and he was not improving as the other two triplets were. The whole point of the trach tube was to be attached directly to
breathing support and therefore be able to come home on breathing support
(rather than remain intubated in the hospital).
From March 31st, 2017, to October 3, 2017, the medical
teams in the ICU worked to bring down the settings of Malachi’s breathing
support until they were deemed low enough for him to come home safely (although
still considered “high settings” by medical standards). Malachi also had to be
stable on the settings, meaning that he didn’t need them to be constantly
changed based on how he was doing from day to day.
On October 3, 2017, Malachi came home from the hospital
on breathing support 24/7 and on oxygen 24/7. Often, we had to go back to the
hospital to tweak settings, check blood gases, be an in-patient when sick (he
needed different settings then), etc. As parents we were trained to closely
monitor his breathing and his oxygen saturations.
From October of 2017 to July of 2018, we slowly worked
with the healthcare team to turn down the high breathing support pressures and
turn down the oxygen litres flowing through the breathing support pressures.
This was as Malachi could handle it - his lungs were slowly growing.
In July of 2018, the medical team said that the settings
were low enough for now and gave the go-ahead to try take Malachi came off his
ventilator for the first time for 5 whole minutes! And he did well!
From July of 2018 until April of 2019, with the medical
team’s close guidance, we have been slowly increasing that time off of the
ventilator from 5 minutes, to 15 minutes, to 45 minutes, and so on. When
Malachi is awake, he breathes much easier than when he is asleep. So while it
took a matter of months for him to be off of breathing support during awake
hours, it took much much longer for sleeping hours. His oxygen saturations in
his blood would start declining and his little chest would start heaving, along
with other signs he needed his ventilator re-attached (that we are trained to
watch for). Every cold or sickness was a setback - some more major than
others. But slowly, over time, the minutes and hours on the ventilator for each
day (and naptime and nighttime sleeping) were reduced.
And then... on April 18th, 2019, Malachi’s medical team
gave us the go-ahead to try keep Malachi off of his breathing support machine
for as long as he could tolerate. We are thrilled and overjoyed and thankful to
God that Malachi has not yet needed his ventilator again! He has been off of
breathing support for over one month! Praise God for blessing Malachi with this
gift...! And also blessing us as parents and caregivers with the relief of
having all our children off of breathing support for the first time ever!
Waking up after 24 hours without a
ventilator for the first time in his life!
Even though he is off his breathing support machine, he
is still often needing extra oxygen when sleeping. His lungs can’t quite
exchange gases as effectively as healthy lungs and he needs a little help here
and there in that department. And so we continue to monitor him closely. He’s
still hooked up to a heated humidifier machine called an Airvo through his
trach tube when sleeping (we can also give oxygen through this special humidifier
machine) and still hooked up to a monitor to watch his oxygen saturations while
sleeping. And he still needs to be watched 24/7 (which means we still need
nurses to come every night so we can sleep), and suctioned, and to have all the
regular equipment cleaning and trach care he’s needed all along. We still take
all his backup and emergency equipment and machines with us wherever we go too,
as a precaution.
Will he need the ventilator ever again? We don’t really
know at this point. He could definitely still need it if he gets sick. He could
possibly still tire out in the near future and need some breathing help. But
the future certainly looks hopeful!
Why can’t we just take out the trach tube if he doesn’t
need the ventilator at this point?
Well, there’s a number of reasons. If the trach comes
out, it’s very possible that the hole in his neck will close on its own
(sometimes they do and sometimes they need surgery to be closed... depends on
the child). So, if we let him run around with no trach and the hole closes
(doesn’t that just sound like freedom?!), it would be a huge emergency if he
got sick, tired out, or needed the ventilator for any other reason. While there
are other ways to ventilate a child, we want to do as little damage and bring
as little pain as possible to Malachi. We want him to be safe.
And so, we need to have a number of tests run on him to
ensure that:
1) He is ACTUALLY doing well off of the ventilator. Are
his blood gases okay (you can’t always tell by looking at him), is he
comfortable enough or is he actually working too hard to breathe, etc...? This
requires extensive monitoring while sleeping overnight at a hospital hooked up
to tons of probes, wires, and monitors.
2) If we pulled the trach tube out, could he breathe okay
or has the structure in his trachea/ windpipe/ neck been damaged by having a
trach tube placed? Often, cartilage is damaged by trach surgery and collapses
without the hard plastic of the trach tube in the neck. We may have to have
special tests done for this where Malachi is sedated and scoped.
3) How will Malachi do when sick without a trach? This is
a tricky question because having a trach and being sick is not the same as not
having a trach and being sick with the same sickness. The trach tube prevents
mucous, boogers, secretions, etc. from being able to easily be coughed up or
cleared. It can easily make bacteria stay and grow. And so, it’s not really a
fair assessment for him to have a trach and be sick... he might do better being
sick WITHOUT the trach. But we don’t really know.
4) Is the healthcare team comfortable without the
“security” of the trach? The trach means we can easily ventilate Malachi if
needed. We KNOW his lungs will never be as healthy as an average child so we
know he will struggle more through sicknesses. At what point is it safe to
remove and at what point is it safer to keep it in for a while longer? Since
Malachi has also been needing oxygen still, would the team be comfortable
letting him have oxygen under his nose through an oxygen tube, or will they see
this as a sign he still needs the trach tube? Over the next months, the medical
team will be discussing this (and that means professionals from different
specialties and hospitals who all know Malachi coming together to discuss and
decide).
With all these questions in the air, we begin some
testing already this month. Our “biggest” test will be another sleep study
happening in a week’s time. We have been so anxious and excited and stressed
out and flip-flopping between unrealistic optimism and unrealistic pessimism.
We pray each day that he is ready for it to come out because it would make his
life AND our lives exponentially easier..! (Especially with a baby coming in few
months, the LORD willing!) And we ask for your prayers too that his
tracheostomy tube can be removed in due time... maybe even this year. At the
same time, we obviously want what is best and safest for our child. We want him
to be safe. We are scared to think about what would happen if he was sick
without having a trach! It’s become our security blanket too, because it has
become so normal for us. And we know it is a very real possibility that he will
"fail" the sleep study or some of the next tests and still need the
tracheostomy tube (and ventilator) for a long time yet.
But ultimately, we give it over to God (even though
that’s so often easier said than done). His Will be done! He’s brought Malachi
to this point even though doctors told us multiple times they didn’t know if he
would survive or that they were “backed against a wall” in terms of the
breathing support available to help Malachi. He’s worked miracles again and
again for our sweet boy. He’s given us this vibrant, spunky, stubborn little
guy even though we’ve seen him blue, white, grey, and lifeless multiple times
in the hospital. He's had a "popped lung", a pneumothorox, many lung
collapses, and pneunomias. We’ve watched him receive CPR by medical
professionals and we’ve had to resuscitate him at home many times. That he
walks and runs and misbehaves and talks our ears off and yells and sings and
fights with his siblings and dances to music... all gifts we do not take for
granted! To God be the glory.
One of our three miracles
“Rejoice always, pray
without ceasing, give thanks in all circumstances; for this is the will of God
in Christ Jesus for you.” (1 Thessalonians 5:16-18)
