Little Levi has had a great week and is absolutely thrilled to have that vent tube out of his throat. He has healed up nicely since it was removed on Wednesday and each day he gets more and more back to his normal, happy self.
Time for the good news: as of now it looks as if the procedure (Stage 1 of this experimental surgery) was a success! Now I say that very hesitantly because there are many factors involved here…
This isn’t a “woohoo it worked, now check that issue off the list!” procedure. We will still be going back into the operating room on Thursday to check and see if his cricoid is trying to tighten back up. If it is they will put another balloon dilator in and try to pop the scar tissue wide open again. But if they go in on Thursday and everything looks to be holding its own then we will transition into Stage 2 of the process. Since this is still a very new experimental procedure they will be monitoring him extremely closely over the next several years (Stage 2).
That means that every few weeks (starting out, every 3-4 weeks) we will be traveling back to Cincinnati to have his throat checked, each time hoping that it will have maintained its open airway. At any point we could see (or hear) signs that it is becoming less successful, like seeing him struggle to breathe when he gets agitated or starts to become more active as a toddler. If that happens we will have to look at further surgery options, but for now Stage 1 is almost complete and seems to be successful! The next big step is letting him grow and watching what happens to his throat in the process.
We are still hoping for a great report on Thursday! If we get that good report we will be cleared to safely go home from a breathing standpoint, but will then need to pass the NICU tests to get discharged. Levi still needs to master feeds before we can ever consider going home, and we have not been able to start that process quite yet. We are still at least a few weeks away from discharge papers.
Levi is down to 1 liter of oxygen…this is absolutely amazing!! Prior to surgery he was at 6 liters, then on the ventilator for 10 days. Within 4 days post op we have been able to safely take him down to 1 liter, with plans to let him breathe without oxygen support very soon! Before surgery when he would get angry he would drop his oxygen saturation down from 100 to the 70s, mainly because he couldn’t catch his breath from the paralyzed vocal cords. Now when he gets angry it drops from 100 to 95.
Visibly he is also in such a better place. Before surgery he would retract his ribs so aggressively as he tried to suck in air to breathe. Now he has typical baby retractions. I took a video today so you could get a visual:
Audibly Levi does still have a stridor when he gets worked up. This devastated me as I saw this as a sign the surgery did not work, but the surgeon spoke with me today and reassured me that almost all of the kids who have this procedure done go home with some level of stridor. She said that as long as it does not impact his oxygen levels or make him retract when he breathes that the stridor is okay. That was a huge relief to hear.
Now on to the one big negative…
We knew there was a risk going into this that we would potentially be messing with Levi’s ability to produce sounds. Logically speaking it makes sense, so see if you can follow my explanation. When your vocal cords come together you produce sound. Levi’s vocal cords were always together because they were paralyzed, so before surgery he actually had a pretty loud cry. When we surgically widened the airway, creating a gap between his vocal cords, we made it harder for them to meet together again to produce sound.
It looks like Levi’s voice has been affected more than we had hoped, but as he grows this may change. For now he has a very soft and quiet cry. It is actually a mixture of sweetness and pitiful. Here is a video:
It is things like this that make me question whether or not we made the right decision for him. I am so curious what Levi will say when he is older- if he will be thankful that he was able to live trach free with a softer voice or if he will mourn over this decision we made for him.
Levi is also still coughing and it is an extremely hoarse noise, which the surgeon explained was normal as the throat area has been insulted significantly.
You would never know that this boy has been through so much by the way he acts. He is the most curious and bright eyed kid in the NICU and even the nurses talk about his disposition and how unique it is. He is such a content and sweet spirit and tries his hardest to see everyone and everything going on around him.
And he might possibly have the most expressive eyes and eyebrows in the world.
His weight is up and down these days as we are struggling a little bit with his tube feedings, but today he weighs 5 pounds 8 ounces. His stomach is not tolerating feeds and he has been vomiting anything we put into it. So to keep him fed and content he is getting his feeds by a tube in his nose directly into his intestines, but this obviously isn’t the permanent solution we want for him. We have been x-raying his belly to try to figure out why he isn’t tolerating the food in his belly and the answer isn’t quite clear yet.
Jake, Malachi, and I got the call Christmas night that a room was opening up in the Ronald McDonald House! We packed up our things in the hotel room and made the move the day after Christmas and are so much more comfortable. The house is large with 78 guest rooms and serves a lunch and dinner each day. It takes under two minutes to walk from the house to the door of the hospital so life just got so much easier for our family.
It is insanely cold here in Cincinnati. INSANE. The high tomorrow is 12 degrees with a low of -3. And yes, that was a negative sign. We found a store close by and loaded up on some hats and gloves to help preserve our weak, southern skin.
Thanksgiving, Christmas, and now New Years 2017 have been spent in hotel room and Ronald McDonald Houses. For Christmas dinner we feasted on peanut butter and crackers, milky ways, and some snacks that we had been gifted a few days before from family. Jake and I aren’t big holiday people but this was definitely what we had in mind when we pictured our first holiday season as a family of four.
But Malachi loved opening his presents and spent the day playing with all of his new toys.
I have transitioned into a very anxious momma mode. All I can think about now is getting my family back to Tennessee. And each day that ticks by makes me more and more anxious. I have not been back to my house since a few days after Levi’s November 14th birthday and my desire to be back in my home is now trumping any thread of patience I had left.
We are now at the point where we are cleared to focus on feedings with Levi and the therapists needed to do this are off for the weekend and holidays. I know it isn’t fair to aim my anger towards them for simply celebrating a holiday, but we have now wasted three more precious days. We will try to pick up the process again when they return on Tuesday but we will also have to bring things to an abrupt halt on Thursday for the procedure and Friday while he heals. Then we sit for another whole weekend.
As I sat and stewed tonight about my very intense level of impatience a certain Bible story came to mind. I looked it up and saw it with fresh eyes as I related it to my situation. It’s funny how God can give you new lenses to see old things in a different way.
I read through the classic story of Joshua and the Battle of Jericho. The Lord told Joshua that He was delivering the city of Jericho into Joshua’s hands, and that he was to march around the city with all of his armed men and the ark of the covenant ONE TIME every day for 6 days. Then on the 7th day the army should march around the city 7 times and at the blast of the trumpet the army was to shout.
In Joshua 5:10 we read: “But Joshua had commanded the army, “Do not give a war cry, do not raise your voices, do not say a word until the day I tell you to shout. Then shout!”
As I read this story I found myself relating so much with the men in the army. I picture them gearing up each day for their march around the city. Historians tell us that the city of Jericho was only about 6 acres total, but adding in the giant walls made it more like 9-10 acres. That distance couldn’t have taken the men much time to walk around.
So day after day, it was the same routine…get up, put on your armor and gear, get in formation, and march one lap. Then back to camp they went.
I can imagine some of the eye rolls and conversations that went on within that camp at night as the men grew more and more frustrated in the lack of progress. And for six days it was the same old routine.
But then that 7th day came. The men started the routine, but I can picture their excitement and enthusiasm as they realized that this was THE day. They marched their 7 laps and then the moment came…
Joshua 5:16 “The seventh time around, when the priests sounded the trumpet blast, Joshua commanded the army, ‘Shout! For the Lord has given you the city!’ ”
And we all know the end of the story- those walls came tumbling down.
Jake and I were talking this week about how unexpected this new challenge was. We talked about how we have seen the hand of God in the last few weeks, but we have also seen the devil hard at work against our family. We have watched him with his brick and mortar, building walls in our lives that need to be torn down.
The stress and tension in our family on a daily basis right now is almost too much to bear. Malachi’s severe needs, Levi’s physical needs, financial needs, logistical needs, and the list goes on and on. The devil is taking these things, brick by brick, and using them to build walls in our family and in our marriage. We have encountered walls before, but none of this magnitude and strength.
As I read this story I couldn’t help but ask the question that I am sure many of the men asked…why did they have to wait?
Here is where a Bible scholar would wow you with some awesome answer about Biblical numbers and their significance. But since I am not a scholar, I will give you the less profound reply of: they chose to walk in faith.
To me right now, the number 7 does not matter. What matters is that they trusted God to do what He promised He would do. They got up each day and prepared to walk in faith…as ridiculous as they may have felt…and how impatient they must have been.
As much as I like to pretend that I am alone in my suffering, the reality is that many of you are facing your own walls that need to come crashing down. They may be tiny walls that the devil has just started foundations on, or massive walls that he has been constructing for years. And there is no denying how discouraging each day can be when you look at the size and magnitude of these battles we are facing.
A friend sent me a verse this week; Habakkuk 2:3 says “For the vision is yet for the appointed time; it hastens towards the goal and it will not fail. Though it tarries, wait for it; it will certainly come and not delay.”
I am going to do my best to focus on is that 7th day for the Israelites…the day when Joshua led them in a shout of victory as God gave them the city and allowed those walls to crumble.
I sincerely wish that God had sent an angel to me to tell me what day we would be our “7th”. But since that didn’t happen, I will have to make the decision to walk blindly in faith. To get up every day, gear up for my battle, and walk boldly into the NICU knowing that soon God will give me the command to shout in victory.
There is a reason we are still here. It is in God’s plan- a plan He has chosen to not reveal to me quite yet. So like the Israelites and Joshua did, I will do my best to trust that God’s timing, as annoying as it sometimes might feel to an impatient Leah, is perfect.
But oh how you will hear us shout in victory when the time does come. We may not fully understand why God is continuing to allow those walls to stand, but we will trust that when the time comes, not one brick will be left on another.
Watch out walls of Satan, because the Carrolls are circling.