Living Trach-Free!

Most of those who know us and follow us on social media have now heard the amazing news since our last blog post that Malachi is now trach-free!

Malachi with all his medical equipment the day before his scheduled bronchoscopy

The Big Day:

On September 20th, Malachi had a scheduled sedated bronchoscopy (scope into his airway). What a wide range of emotions we felt that day... starting with the van not starting early in the morning and Jodi needing to rush to the hospital somewhat late with a 2 year old and a 1 month old and a diaper bag and medical equipment including Malachi's suction machine, emergency go-bag, oxygen tanks, and oximeter machine and no stroller..!
(Side note: we never let the triplets walk in the hospital or touch anything like doorknobs or elevator buttons. We learned early on in the NICU that hospitals are rather dirty and a prime place to catch sicknesses from all the other sick patients! So Jodi was a sight carrying everything!)
Anyways, we arrived on time and Nathan managed to arrive on time as well with the fixed van and stroller. Malachi was a champ and was calm with Mommy in the OR as they put him to sleep. When the ENT surgeon finally came out, he told us that Malachi had some collapsing soft tissue like a flap covering a lot of his airway above the trach tube. This is common in children who have had trach surgery. He showed us photos (pretty cool) but we felt overwhelming disappointment... we thought this meant months more of waiting for an OR date and then an airway reconstruction surgery! But then the doctor continued by saying that he was able to cut most of the flap off and sew up the rest onto the side of his airway and that everything went smoothly (overjoyed!) The doctor said Malachi's trachea was healthy and that the tracheostomy tube could have been removed... but there were currently no spare beds in the PICU. Again, we felt disappointment... but at least this disappointment was mixed with the hope of soon being trach-free! Jodi was able to go into the post-op room where she panicked momentarily at the sight of blood coming out of Malachi's trach tube. We'll spare the details of the rather gruesome sight and let you know that Malachi's recovery went overall smoothly. Our hearts went out to the little guy for having yet another surgery (not what we were expecting from this scope) and we were truly thankful for the support of the nurses and healthcare staff caring for him (many of whom we already knew.)

After only a few hours, we were able to return home. Within 2 hours of being home, however, we received a phone call that Malachi could come to the ICU at 6pm and have his trach removed! Praise the LORD that a bed had opened up! Jodi hung up the phone and said to Malachi: "Malachi, we need to go back in the van!" Malachi looked up from his toys and said, "No thank-you, Mommy. No more hospital..."

And so that evening, after 904 days with a tracheostomy tube, Malachi's trach tube was removed! Many hospital staff members popped into his room as everyone celebrated this incredible milestone.

Malachi with Daddy and Mommy right after decannulation. He was a little unsure with all the attention and commotion and extra people in his room!

He cheered up soon after and if anyone asked him where his trach was he would say: "All gone! In the garbage!"

Is Malachi now able to get colds and sicknesses just like any other kid?

Many people have asked us if Malachi is now "normal" in the sense that he can handle colds and viruses like any other kid. Can we ease up on our strict rules around having only healthy visitors, etc.?

The answer is that Malachi still has severe chronic lung disease (just like Liam and Taylor who have milder cases of it). And so, colds and viruses will always be harder for him to get through. Often, he still needs an oxygen tube under his nose when he is sleeping  even when he is healthy (breathing while awake is different than breathing while asleep). When he is sick, he will still need extra oxygen and maybe even some breathing support through a high flow nasal cannula or a CPAP mask. We need to watch his breathing and monitor his oxygen levels especially when he is asleep and/or sick.

It is our hope and prayer that as time goes on, he will be able to handle colds and respiratory viruses easier. That's because lungs continue to grow until a person is between the ages of 7-11 (roughly... we've heard different statistics from different doctors). So until he reaches that age, we should see improvement in his tolerance. Please note that this has nothing to do with his immune system needing to get stronger. We often hear well-meaning comments that it is "good for the triplets to get exposed to colds and viruses so their immune systems improve and they can handle them better". On one hand it is true that their immune systems are not as strong because they have not been as exposed to colds and viruses. On the other hand, it has not been safe to expose them to colds and viruses because their lungs are not healthy enough to handle it (a separate issue from their immune systems). And so, as they grow in the next few years, as parents with the guidance of doctors, we have to carefully weigh how much we should be exposing them to and how much we should be protecting them from.

Ready for bed with his oxygen tubing all set up

Why remove the trach if he still cannot handle getting sick very well?

Another good question. Malachi's sole reason for having the tracheostomy tube was to ventilate him through it because his lungs were damaged (from being born prematurely at 25 weeks gestation). Because we had the trach tube, we were able to take him home from the hospital on a ventilator. Over time as his lungs grew, he didn't need the ventilator 24/7 and eventually only needed it when he was sick. The thing is, having a trach tube (which was truly a blessing!) also meant that sicknesses were often worse for him. This is because the trach tube sits right above the lungs... a perfect recipe for pneumonia as bacteria can easily grow and mucous can't get easily coughed up. Malachi often had pneumonia when he had his trach.

Now that his trach tube is removed, colds and viruses may mean that we end up in the hospital on a ventilator, since we can no longer ventilate him at home through his tracheostomy tube. His lungs are still chronically damaged even with the trach removed. However, the plus side is that his colds and viruses will hopefully not be as severe.

Further, having a trach tube is a safety issue in many other areas. He needed to be watched 24/7 because the trach tube could become plugged with mucous (so that he couldn't breathe at all) or accidentally come out (not as big of a deal the healthier he got but could mean a second surgery if he wasn't ready for it to come out and the hole closed on its own). The trach tube is also a huge drowning risk. And so, having the trach tube removed has taken away a lot of other safety concerns (not to mention a LOAD of work!)

How has Malachi been since his trach has been removed?

It is interesting that as parents, we thought we would feel a huge relief as if a huge burden and responsibility had been lifted from our shoulders once Malachi's trach was removed. That hasn't been the case at all and we have felt quite stressed and edgy. Part of the reason is that our "security blanket" has been taken away. We knew what to do when Malachi got sick. Sure, it often meant a hospital stay but we knew how to handle a lot from home in terms of his ventilator and oxygen. Now, when he gets sick, we don't have as many options! Also, we are used to Malachi being watched 24/7 and on monitors. While we still have nursing coverage at night, we have a meeting coming up where our nursing hours are going to be discussed... and we are told, likely reduced or taken away. Malachi's doctors still recommend he is watched all night especially when he is sick, but there are guidelines and rules for home care nursing qualifications and so we aren't sure if we will be able to have this in the weeks and months to come. That is a huge stressor for us... what if we don't wake up from his oxygen monitor alarming? After all, we hear all sorts of alarms in our dreams! Will we be able to even sleep knowing no one is awake watching his breathing and oxygen levels? Time will tell.

In the meantime, Malachi has recovered well from the soft tissue being removed and stitched. His trach stoma (hole) is still gaping in his neck and may need to be surgically closed in 4-6 months if it doesn't close on its own (we hope and pray not!) He often needs oxygen under his nose while asleep to keep the oxygen levels in his blood high enough.

Recently, Malachi had a cold from which he is currently recovering. While all 3 of the triplets needed puffers to help them get through the cold, Malachi especially (unsurprisingly) had a rough go. We ended up at the hospital twice with him since he required more oxygen than we are "allowed" to give him at home in order to keep his blood oxygen levels up. Further, his little chest and abdominal muscles were heaving away as he worked hard to take each breath. We need to take him to the hospital when this happens because he can quickly tire out and not be able to oxygenate or breathe effectively by himself anymore. We've been warned rather strictly to not let him be working hard and chugging away for too long. The doctors have warned us that we don't want to be at home or even on our way to the hospital when he gets too exhausted to breathe...
After two hospital visits, many texts and phone calls with the complex care doctor working on the weekend, the doctor decided that a bed at the hospital would be "saved" for Malachi on Saturday night where he would likely receive breathing support. The ER staff and ward were expecting us to come in, but thankfully Malachi turned a corner and we have been able to stay home for the remainder of the cold!

Photo of the triplets by SD Photography taken while Malachi's trach was still in

And, of course, our sweet Hazel!

Thankful

We have mentioned how stressed we feel without having Malachi's trach anymore, but we of course feel immense gratitude that the LORD has brought Malachi to this point in his life! Our medical journey isn't over yet, but a huge chapter has closed. Looking back, we are humbled at how the LORD has blessed our family. We were told multiple times by doctors that each of our triplets but Malachi especially might not live... and here we are with three (no, FOUR!) beautiful children of God. We were told that Malachi would likely have his trach until he was at least three or four years old... and here he is trach-free at two years old! In many ways, God has worked miracles for us and we are so grateful. It's not always His plan to give life, or to take away pain, or to allow "typical" development, or to remove trachs... but to Him be the glory in all situations and circumstances!

If you've made it to the end of this blog which has been much longer than intended, we'll leave off with the words from Matt Redman's song "10,000 Reasons (Bless the Lord)" which the triplets love to belt out at any given moment:

"The sun comes up
It's a new day dawning
It's time to sing Your song again
Whatever may pass
And whatever lies before me
Let me be singing
When the evening comes

Bless the Lord oh my soul
Oh my soul
Worship His Holy name
Sing like never before
Oh my soul
I'll worship Your Holy name"