Prayer Requests for Malachi's Bronchoscopy

Malachi has an big week ahead, and as parents we wanted to share a little update to "correct" a lot of the things we have been hearing, and to also ask for prayers. 

First though, we want to share a few photos of our beautiful baby girl that God gave to us on August 9, 2019. We named her Hazel Grace VanWoudenberg. She was 8lbs and 14oz at birth... which when calculated is 5.2 times heavier than Taylor (our smallest triplet) was at birth! We are so grateful to be experiencing a full-term baby and all the incredible blessings that come with it. What a miracle and what a gift life is..!

Brand new

Such a smiley and sweet little girl!

The first thing we wanted to "correct" is that Malachi is not necessarily getting his trach tube out this week. It is a possibility, but there are a lot of things that could prevent this from happening. 

In our last update, Malachi had gone for a sleep test in July that had revealed he was having periods of apnea while asleep. The apnea was both central (mild) and obstructive (one "point" shy of severe). This news was disappointing for us to hear. The doctors told us that the next step was to schedule a sedated bronchoscopy for Malachi. This test will be, if it is the LORD's plan, this coming Friday September 20th. This is the first time Malachi goes for this test.

If Malachi gets sick with a cold or anything, the bronchoscopy will be cancelled and need to be rescheduled. There was a 2.5 month wait list to get our current date, and so we pray that he (and our family... in order to protect him from anything) will stay healthy for the next 5 days!

If he remains healthy for the bronchoscopy, Malachi will be brought to the OR and sedated. The doctors (specifically, his ENT doctor) will use a scope to check out Malachi's airway through his tracheostomy tube and potentially without his tracheostomy tube inserted as well. The doctors want to see if there are any areas of concern, such as collapse or damage (from the tracheotomy surgery) or growths or obstructions. This could very well be the case, since the sleep study did show obstructive apnea, meaning that something was in his airway causing him to have difficulty breathing while asleep. However, the obstruction could be the trach tube itself. This is the scenario that we are praying is indeed the case!

If Malachi's bronchoscopy does end up happening there are three possible scenarios: 

1. If the bronchoscopy shows that there is a problem in Malachi's trachea/ airway, then the doctor will put the trach tube back in. Once Malachi wakes up, we will go home and a new plan will be formulated by the doctors on his team (we will probably be looking at more than a 6 month time frame for this). This would likely mean a surgery of some kind to correct the problem(s)... a scary scenario for us as parents. 

2. If the bronchoscopy shows there are no problems in Malachi's trachea/ airway, then the doctor will be able to take the trach tube out (hopefully permanently). First though, the doctor will need to confirm that there is a hospital bed available for Malachi in the pediatric ICU (PICU), as he will have to be closely monitored for the next few days. 

3. If there are no available beds for Malachi in the PICU, then the doctor will put his trach tube back in. One Malachi wakes up, we will go home and wait for a bed to be available for him. Once everything lines up, we would be able to take him to the hospital, take out his trach tube while he is awake, and stay until he can safely go home. We would also need to wait for his tracheostomy stoma to close up (aka. the hole in his neck) before we could go home. We are told this could take a few days or a few weeks.

Thankful that this little guy is still worry-free and too young to understand this all

And so our prayer requests are these:
- that Malachi remains healthy and sickness free so that he can have the OR procedure this coming Friday
- that the bronchoscopy goes smoothly (it's always scary sending your child to the OR and having him/ her sedated!)
- that the bronchoscopy shows no areas of concern, collapse, damage, growths, or obstructions
- that there is a hospital bed available for Malachi
- that Malachi can have his tracheostomy tube removed safely and permanently 
- that the stoma/ hole will close quickly and on its own without surgical intervention 

If everything does go smoothly and how we have been praying so hard for in these last few months, we know that Malachi's medical journey won't be "over", so to speak. We will likely be going home with oxygen still that he would receive via a nasal cannula (tubing taped under his nose). We don't know how he will be when he gets sick... while he will likely not get as sick without the trach tube, we don't know for sure that he will not need ventilation or respiratory interventions. There will be a lot of uncertainty and close monitoring for a while. And he will likely always have a harder time with colds and sicknesses and respiratory things. Of course, he still has his g-tube (feeding tube) as well. But that will all be the next hurdle... for now, we are focused on the bronchoscopy and where that will lead us!

Our triplet two-year-olds

We have a lot of anxiety and worries for this next week, yet we continue to lay them before God. He has a perfect plan for Malachi, and we need to accept whatever it may be. Our lives would be exponentially easier without that tracheostomy tube... all the work that comes with it and the great responsibilities it gives us with all the risk factors it presents... yet it is not up to us to decide whether or not he still needs it. He teaches us again and again to simply trust Him!

Everyone is in love with Hazel