On Tuesday morning Levi went back to the operating room for a three-in-one as we tried to do as much as possible under one anesthesia. The first thing they did was another bronchoscopy to check his airway for any changes. It looks the exact same as the previous bronchoscope that was done 2 weeks ago, which is a good sign that his airway is maintaining the corrected shape.
The second thing they did was a circumcision….let’s all collectively cringe together as you read that one. And enough said about that…
The third and most important surgery that happened on Tuesday was the placement of his g-tube. So let’s all gather round and enter the medical world for just a minute.
Levi’s vocal cords don’t move, so it makes drinking liquids a little complicated. Fortunately he has passed the test that showed whether he was taking liquids down into his lungs (aspirating) so we are ready to continue to proceed with feeds! The team here has been very hesitant to keep attempting feeds based on his work of breathing- they don’t want to stress him out any further. In addition to their hesitancy, every time he is placed back on high flow oxygen all attempts to teach him to eat come to a halt per protocol.
After thinking long and hard about the pros and cons, Jake and I agreed to go ahead and place a g-tube in Levi in an attempt to get him home sooner. We would be here at least another 2 months trying to get him to full feeds by mouth otherwise.
Part of our reasoning: the tube can be a temporary thing. As soon as he starts drinking all of his feeds by bottle we can head to the doctor and pop that sucker out.
Now I am new to feeding tubes, so bear with me as I try to communicate what I have learned so far. I have a wonderful friend who has been guiding me a bit through this process and she will probably have a good laugh hearing my simplistic explanations haha, but here we go…
Levi has a low profile (meaning it doesn’t stick up much off his belly) mini button. Here is a great visual of how feeding tubes work:
I took some pictures of his button to help you understand it a bit more. The large part of this device is what sits on the outside of Levi’s belly. The stem is the part that is in Levi’s tummy. The picture on the left shows what it looks like when they initially put it in. After they put it into the hole in the stomach they fill the balloon on the end with water to keep it anchored in the tummy.
In both of these pictures, the cap is closed. When it is time for Levi to get a feed, you open the cap and clip on an extension that is attached to a bag of formula. Here is a picture of the extension tube.
So now that you have seen what all of the pieces look like, here is a picture of Levi with his new button. The cap is open and the extension is hooked up because he was being fed when I took the picture.
When Levi finishes a feed you can take the extension off, close the cap, and viola! No one would know he is a tubie kid.
When the feed is running, we will be hooked to a small backpack that has a pump inside. We can’t just pour the feeds in quickly as that is not how you and I eat, so instead the pump can be programmed for it to run over a certain amount of time. Ideally we want it to be 30 minutes, which is about the time it would take a typical kid to finish a bottle. Right now Levi’s is running over 2 hours, so we will be working hard to get that time down. He “eats” every three hours, so when it is running over two hours he would only have an hour of not being hooked to the machine. That sentence sounds confusing now that I read it back.
I am sure you are thinking what I was thinking…what if he pulls it out?!? It will have to be replaced quickly, as the hole can heal incredibly fast. They will be teaching us how to replace one but until then we are crossing our fingers and keeping a catheter close by just in case we need to put it in to keep the hole open. For the first six weeks (until we are taught how to change it out) we will have to run him straight to the ER if this happens.
Levi had a little trouble tolerating the pain of his big surgeries and required morphine for several days after. But now that the pain is gone he is tolerating everything very well and is only taking Tylenol every now and then when needed. In the last two days he has been vomiting an unusual amount but we are told that some kids do this after the g-tube surgery.
As you probably remember, one of the other HUGE draws to doing the g-tube was getting the NG tube out of his nose/airway to see if it would help him breathe. While it seems to have helped slightly and changed his stridor a bit, it hasn’t been an amazing transformation…but we are hoping it is just enough of a change in the right direction to think about sending us home soon. He is no longer having any drops in his oxygen or heart rate and he is able to recover (almost all the time) when he gets agitated without needing supplemental oxygen.
Here is a video so you can hear his stridor. There is a sneeze fake-out in there that is pretty cute too:
Tomorrow is a big day as we meet with Levi’s surgeons and NICU doctors in a patient care conference. We will be discussing the next steps in Levi’s care (trach or no trach) and talk about timelines for being discharged home. I almost hesitate posting that because I often get a barrage of texts after big events like these asking how things went, and often I am not ready to share our news with others that quickly. I am very open and public on the blog after several days of processing, but I am still very sensitive to talking about Levi these days. But I promise you will all get the full scoop on next week’s blog!
Levi’s hair has grown so much in the last week! It is a bright blonde with an orange undertone to it. Not quite sure how that will end up, but it is beautiful!
We are also watching his eye color change and making bets on which of us will win- Leah with her blue or Jake with his greenish blue…
We have also gotten some more beautiful smiles this week.
Speaking of smiles, Malachi has done so much better this week with his sadness. I made a conscious effort to be more present when I am with him and make sure we had fun and silly moments together. We danced, played airplane (which was a workout), and played silly imagination games. He was a different kid this week and didn’t cry once!
We also took him to a magic show at the Ronald McDonald House and he was enthralled…more with the other children than the magicians but they don’t need to know that. His laughter will be good for their self esteem.
I am officially living the mommy life. This week I have worn pee, poop, and vomit from both boys. They have managed to “mark” me from the top of my hair to the shoes on my feet, reminding me that I am special to them. And reminding me how thankful I am for more than one pair of jeans.
Many of you have asked about the Ronald House here in Cincinnati so I snapped a few pictures of our room today.
It is essentially a glorified hotel room, which we are very grateful for. There are two beds, a small refrigerator for meds and drinks, and a bathroom. We were able to smuggle in a chair from one of the lobbies (with permission of course) to feed Malachi.
There is also a laundry room on our hall where we can wash our clothing and bedding for a small fee. They do not have housekeepers here, so we are asked to keep the room tidy and organized and we are absolutely not allowed to have food in the rooms. They are very strict with the rules and do room checks often.
Ronald McDonald Houses are amazing. They ask for a small donation for the room each night that you are there ($25) but will not turn you away if you can’t afford that. They provide a meal every day at 12:00 and 6:00 and the food here is actually pretty impressive. There is always a salad, two main dishes to choose from, and a few vegetable sides.
BOTH the Chattanooga and Cincinnati houses have been such a blessing to Jake and I over the last five years. We have spent nearly 160 nights in the Chattanooga location and over 50 nights here in Cincinnati.
I know that all sounded like a commercial, but I just want to help spread awareness for such an amazing facility. If you ever have the chance to volunteer or donate to one, please know that it holds a special place in our hearts as it has allowed us to be near both of our boys at their most vulnerable times. There are change bins on most McDonalds drive through lanes that you can toss some coins into if you ever run find yourselves there. They also accept canned drinks “tabs”.
I have been back and forth with what to share with you all this evening as I process a devotional thought. God has been burning a few things into my heart lately. And let me take a side step and thank you all for your prayers this week, as I know they are partially responsible for the better week I had emotionally.
The last few days I have been really processing the “why”. Not necessarily with our situation, but in many different scenarios. The one that caught my mind this week was the story of Shadrach, Meshach, and Abednego. Many of you already know the story of these three men and the fiery furnace, but if you aren’t familiar I want to challenge you take take a moment and read Daniel 3.
Cliff notes version- the king makes a giant statue and says that everyone must bow down at the cue of the music and worship it. He also says that anyone who doesn’t bow down will be thrown into a fiery furnace. Yikes.
There are three Jews in the group that make the decision to not bow down, as it goes against what God had commanded them. The tattletales of the group (let’s admit it, every group has them) run to the king and report what they had done. The king gives them a second chance, again citing the furnace as their punishment but still they refuse. Their reply to the king always gives me chills…
17 If we are thrown into the blazing furnace, the God we serve is able to deliver us from it, and he will deliver us from Your Majesty’s hand. 18 But even if he does not, we want you to know, Your Majesty, that we will not serve your gods or worship the image of gold you have set up.”
There are so many things that I love about these verses. Their faith that God can deliver them is so impressive. But what impresses me even more is verse 18…they look at the worst case scenario…God not delivering them…and they choose to stand firm.
I want to have a faith like that. A faith that declares the power of God, regardless of my circumstance. Too often we find ourselves thankful when God gives us what we want and bitter when we feel like He didn’t give us what we think we deserve.
But on to the “why” I mentioned earlier.
I have been analyzing this story in so many new ways. Why did God allow these faith filled men to be thrown into the furnace? Why didn’t he save them from even being tossed in? He could have prevented their near-death experience and still done so in a gloriously awesome way.
And that has led to the bigger question: Who was this situation for? Was it for the three men who were tested to stand in faith against the king, all while knowing the consequence was death? Was it for the king who, after they were delivered unharmed from the fire, realized his sin and changed his ways? Was it for a random man in the crowd that needed to be reminded what it means to stand up for your beliefs?
I am connecting with this story more than normal this week. I feel like Jake, Malachi, Levi, and I are inside of the fiery furnace right now. I am so in awe of the way in which God continues to protect us from the flames that surround us, but I can’t help but wonder who this experience is for. Is it meant to strengthen our faith, as we watch God’s providence unfold? Is it meant to be a grand display of God’s power for one of you in the crowd who may not know Him? Is it meant for some of you who may know God, but are in a point in your faith where the ways of the world seem safer than standing tall?
This week as I processed this story and our furnace I came to the conclusion that although the temptation to be narcissistic and think that this trial we are in is all about me, maybe I need to be embracing the idea that God is simply using our shaky platform to bring others closer to Him. And if that means we have to hang out in this darn furnace for another few months, or even years so that more people can see the beautiful hand of God then so be it. And I say that through clenched teeth, because every bone in my body aches to be at home with my boys living a hospital and diagnosis free life.
I guess I need to be reminded every now and then that God’s picture is so much bigger than I can even imagine. Instead of making my trials all about me, I need to change my mindset and realize that maybe we are the Shadrach, Meshach, and Abednego…the faith filled men in the fire but still wrapped in the protective arms of God. So instead of being mad about the flames around me, I will choose to be grateful that they don’t sting. And in fact, the very flames that were meant to harm me have burned the ropes that were binding my arms. And I will choose to be grateful that our grand old bonfire has brought attention and glory to God.
In the end, if we are truly followers of God, this life isn’t about us anyway.
Please be in prayer for our big meeting and for my emotions to be able to receive any information that comes our way. I also need to ask that you all start praying for an intense amount of wisdom for Jake and I. Even after we leave the hospital, we will have two very medically fragile kids on our hands and we need a wisdom that can only come from God when making decisions for them. There is so much pressure on Jake and I and sometimes that weight causes me to be weary.
We love you all,