I wish I could start this blog by telling you about our amazingly wonderful week, but unfortunately things have become a little more complicated for our boy. Levi is back on the ventilator. It is a long story, but also one I don’t have to go into too much detail on as it is the same occurrence that has happened every weekend for the last 5 weeks.
This was not an emergency situation, just a decision made by a team that felt like it was “best” for Levi. I took this picture of him right before they put him back on the ventilator. He was one high flow oxygen and almost back to his baseline. I try my hardest to be his voice and prevent unnecessary interventions, but I failed him on this one.
Levi is now back on the ventilator and being sedated around the clock so he won’t pull his tube out or move his head. When he is like this I am not allowed to pick him up or hold him without a team of people assisting getting him onto me. When he is placed on me, I can’t move and have to keep him from moving his head as it could dislodge his breathing tube. Levi is too strong for me to risk trying to hold him and keep his tube in place…it is just not in his best interest.
All I can safely do is sit by his bed and stare at him. When he gets upset he can’t audibly cry because of the tube and starts to panic. I can pat his butt and put my hands firmly on his body but that is all that I am permitted to do. Here is a video from today…no need to turn on the volume as he is not able to produce sounds while on the vent. Every ounce of me wants to scoop him up or even fix his little head and neck so he isn’t arched to much, but in order to even do that I would have to have the nurse call a member of the respiratory team to do it for me. NICU life has become synonymous with being stripped of my abilities to truly be a mother to Levi.
Saturday was a devastating day. I find myself again and again feeling like I need to be an advocate for Levi, but not really knowing how to best do that. I am so incredibly discouraged. Overwhelmingly discouraged.
This NICU has attendings (change every 7-14 days), nurse practitioners (change every 2-3 days), fellows (change every 3 weeks but have days off), residents (change every month but have days off). This is the group that makes the decisions for Levi’s care with input from his nurses of course. Every time I feel like we are finally seeing eye to eye his team changes and we are back at square one.
Before this setback, Levi has had a wonderful week. He was back at full feeds and growing again. He is such a long legged kid.
He was breathing better than ever before. One of his night nurses who is on his “team” and has him often commented on how he was a different kid this week. Every morning when I come into his room he smiles so big, overjoyed to see me. I got my camera ready one morning this week so I could share his smiles with you.
And one silly little video for you:
But this was also a week for some big decisions. Let’s get to the meat and potatoes of this post.
Let me present you with a “What would you do” scenario. You just had a relatively healthy baby boy, but after his birth you find out he has an airway issue that will require a trach. Here is a flow chart of your options:
Let’s be honest…every single one of these options are miserable for a parent to have to choose from. Every single one of them brings pain to your child. Every single one involves some extent of a hospital stay. Every single one requires surgery. Every single option will change your child’s life and normalcy in one way or another. So what route do you take? How do you even begin to make such an important decision?
We spoke with one of the head ENT surgeons here in Cincinnati this week. This is the man who “created and adapted” the first procedure we tried for Levi’s vocal cords called the Anterior Posterior Cricoid Split. This experimental procedure had been done on 20 babies with the success rate being 80%-90%. He explained that while we are incredibly close (1mm away) from it being successful, it just didn’t open his vocal cords quite enough to send him home safely. Levi is officially part of the 10%-20% failure rate.
Ouch. Failure is such a strong word, and hearing it used in regards to my son after a 4 month fight is extra painful.
So where do we go from here? There are just a handful of desperate options left to try for our little Levi, all of them except for one involve putting in a trach. Jake and I saw this conversation coming and had resoluted prior to the meeting with the head surgeon to give consent to put it in- much to our disappointment.
But as we talked to the doctor our plans changed as I sensed a glimmer of hope illuminating off of his words. He said that taking our family situation into consideration (aka Malachi’s medical needs) that we needed to do everything we could to avoid the complicated life that a trach would bring. While trachs are wonderful, life saving devices they bring about a host of potential emergency situations that require lots of training, equipment, night nursing staff, and alertness at all times.
There is one more surgical intervention we can try, but it is a pretty big surgery and would be an open airway procedure (the work is done through a 1 inch incision in his neck). After lots of consideration, pros and cons lists, and prayer Jake and I have agreed to attempt the surgery for Levi.
On Monday Levi will be going back to the operating room for a 4 hour procedure called Single Stage Laryngotracheal Reconstruction (SSLTR). In airway terms, this one is very complicated and requires 3-4 surgeons to complete. They will be making an incision in Levi’s side where they take a piece of his rib cartilage and carve it into a graft to place between his vocal cords. The graft would be 2mm-3mm, which should be more than enough for the needed 1mm gap that yet remains to be achieved. Think of a top hat shape that fits like a puzzle piece in between a V making the base a bit wider. Over time the body should “accept” the graft and grow around it- it will never need to be removed.
Our goal is to only have to place a graft between the back of his vocal cords (the posterior side). If for some reason they decide that is not enough they will carve another graft and sew it into the anterior side.
If we had decided to trach Levi, this is the exact procedure we would have attempted at the 1 year mark. The only difference is that he is too small to have it done endoscopically like he would at 1 year old. We are incredibly anxious about opening his airway in this way, but also have to keep reminding ourselves that a trach would have opened it similarly and more permanently.
Okay, so on to the best and worse case scenarios…
Best case scenario is this graft works at opening his vocal cords and allow him to breathe without any issues. This procedure has an 80%-90% success rate and the surgeons have based that number on many many many kids who have had this done (some even smaller than Levi). This best case scenario would have us home in about a month.
The worst case scenario is the graft does not open his airway enough; this won’t be able to be determined until the 2-3 week mark post op. There is also a risk that the graft could fall out. If his happens we will put in a trach and try it again in a few years in an attempt to get the trach out. This route would have us home in about 2 months.
Levi will be intubated for 5-7 days after the procedure while his airway heals. He will have a chest drain and a neck drain and will likely be highly sedated to keep him from pulling his breathing tube out- something he has done several times since birth.
After 110 days of praying without ceasing, nurturing a faith that can move mountains, and believing that this time would be different for our little family it seems that we once again struggling with disappointment.
Matthew 17:20 “Truly I tell you, if you have faith as small as a mustard seed, you can say to this mountain, ‘Move from here to there,’ and it will move. Nothing will be impossible for you.”
Our faith is a whole KFC bucket of mustard seeds right now, but that darn mountain just won’t move. Not even an inch…or 1mm in Levi’s case.
We have been making decrees over Levi’s airway. We have been speaking wholeness over him in the name of Jesus. Thousands of people have been praying alongside of us. I have begged, pleaded, tried to reason with God to heal our son(s). But the mountains in his life remain, and they seem to be getting more jagged and threatening.
So what do you do as a Christian when the mountains don’t budge?
You trust God. You continue to pray without ceasing. You continue to plead, believe, decree, and pray. You continue to praise him in the storm. You continue to trust that His ways are greater than our own. You continue to EXPECT a miracle.
There is a man named Nick Vujicic that was born without arms or legs. Something he said has always stuck with me: “I have a pair of shoes in my closet just in case He decides to give me limbs, yet I have peace knowing that He may choose to heal me not here on earth, but in heaven.”
We should always make our desires known to God and expect Him to give us those miracles we plead for, as unfathomable as they may seem.
So as we go into surgery tomorrow I am going to ask all of you to pray for Levi’s miracle once again. Before they will start cutting into him they will be scoping his throat to see if everything has remained unchanged from the last scope.
How wonderfully amazing it will be to hear that they don’t need to continue with the surgery as they have seen his vocal cords COME TO LIFE! I absolutely believe that God is able, and I choose to expect a miracle tomorrow.
And what if yet again we command this mountain to move and it only grows taller and more daunting than before? My prayer is that God will give us the grace to continue to stand in faith, even though our knees may shake with weariness. We will pray that God strengthens our voice to be able to command those mountains to move as many times as needed. We will pray that God continues to lift our arms when I can’t lift them any higher so that you all may hear us praise Him through our pain.
A friend this week sent me this song and it captivated my thoughts as it sounded so much like my heart these days. I hope this blesses you: