Have you ever been anxiously awaiting something? And the nerves from waiting are almost too much to bear as your stomach turns and twists?
This whole journey has been a series of those moments where we do a surgery then have to wait 1-2 weeks to see if it worked. It is kind of like a TV series that leaves you on a cliffhanger at the end of the show with a “To Be Continued…”
I am one of those people that reads the last chapter of a book first so I know how it is going to end. Otherwise I will drive myself crazy envisioning the what-ifs and not actually enjoy the process of reading the book. Movies like Beauty and the Beast made me a nervous wreck as a child. The stress of waiting these last 4 months has taken it’s toll on my spirit as I anxiously wait for good news only to then be hit with the bad news that it didn’t work. It is hard to keep believing, hoping, and fighting when that devastation knocks you down like a tidal wave.
But this time was different…Levi’s most recent surgery looks like it was successful. Praise. The. Lord. We have to keep in mind that as he heals this could change, but initial thoughts are that it has worked.
Levi went in for his MLB (throat scope) on Monday and the surgeons were very pleased with how the rib graft looked. It stayed in place and has started to heal, solidifying it’s placement in his airway. We were able to extubate him (take him off the vent) on Tuesday afternoon and put him on just a tiny bit of oxygen. The following 48 hours were nerve wrecking as we watched to see how his body would do on it’s own without oxygen support. We weaned him down and he did great but got tired and had to be put back on .25 liters. We are going to continue trying to wean him off over the next several days, as we are thinking that his withdrawal from morphine may have contributed to his lack of endurance off oxygen.
But even at his “worst” without oxygen he was able to maintain an oxygen saturation in the low 90s! For those who don’t speak medical, 100 is as good as it gets and ideal is above 94.
The big negative from the surgery is that it does seem like Levi’s voice has been affected. His vocal cords aren’t coming together well anymore and so he is unable to produce many sounds. There are things we can do later in life to try to help give him a voice, but for now we will just pray that he will be able to speak. I did hear him cry for the first time this morning for about 2 seconds so that was exciting!
Levi will go back to the operating room on Thursday (unlike the original plan for scoping this Monday) for another throat scope to make sure everything still looks like it is holding well. But based on how he looks, it seems that this surgery did the trick.
So let’s talk about the future with Levi. This isn’t an issue that we can ever “check off the list”. So we may have succeeded at avoiding the trach for now, but he will have to be watched closely for many many many years- and possibly even the rest of his life. Hypothetical example here, but there may come a time when Levi is running on the playground and we notice he has a harder time catching his breath. Or we start to notice his breathing get a little louder than normal. When those things happen we will have to bring him back to his surgeons to have them make a plan for what they can do to help. That plan could likely involve more surgeries and his follow up care will include LOTS and LOTS of MLBs (throat scopes) as we watch for new issues.
So while we have found a solution, it is essentially a temporary one while we wait and see. Jake and I have learned through life with Malachi that you will make yourself sick trying to envision the future. Sometimes it is best to look at the successes from just today and not let worry rob you of that joy.
What next? Thursday’s throat scope will determine the next step. If it looks good, we will talk about discharge. If it looks decent but they will want to look again we will have to stick around a few more weeks…possibly staying at the hospital but possibly staying at Ronald House with Levi.
Our plan now is to bring Levi home on a small amount of oxygen. It will make me feel better to have it on hand in case of an emergency. If Levi gets sick and his airway swells at all we could be in serious trouble. I like the idea of having a support option available instead of having to rush him to the ER.
He will also be coming home on continuous feeds through his g-tube; that means basically that he is being fed a small amount every second of the day. Obviously this is not ideal as he will be hooked to a feeding pump all day, so we will be working hard to consolidate his feeds a bit more once we are home. I would love to get him down to getting fed every three hours.
We need to be very cautious about trying to get Levi to take a bottle. We widened the gap to his airway significantly and will need to run tests to see if it is safe for him to swallow liquids without that liquid going into his lungs (called aspiration). We are getting dangerously close to the time frame in which babies can no longer learn how to drink a bottle but we will see.
On to the good news from today…Levi has been moved out of the NICU and onto the Complex Airway floor! While this may seem insignificant to you, this is huge to us. We are now able to spend time with Levi as a family, Malachi included. Today as all four of us sat in Levi’s room together I couldn’t help but feel overwhelmed with happiness and encouragement that we can make this chaos work. This week will be the true mom test as Jake heads back to Tennessee and I have both of the boys in the hospital room with me. It will be good to figure out how to manage medications and feeds for Malachi while also caring for Levi as much as possible. My plan is to take Malachi over by 9am when the doctors make rounds and stay until 6-7pm. We will see how all that works out!
Levi is still on a 10 day weaning protocol to help him get off the morphine he was on after his procedure. He has tolerated it well and today was the first time I noticed him having tremors and being agitated- a sign that he may need a little more medicine in him to help with those symptoms.
Malachi is having a much better week, particularly with his seizures. He has not had another large one since his random one last week, and is back to having his normal amount which is about 12 a day. When he is able to be with me all the time we can keep that number down to 4-6 a day so I am really hoping this week will be a good one.
Here is a silly video of him playing with my half brother and half sister!
We are blessed beyond measure. I can’t even put into words how blessed we are. In the weeks following Levi’s birth Jake and I would just sit and stare at each other shaking our heads in disbelief. How in the world could this happen to us…again? After such a watched pregnancy we never saw this coming. This was supposed to be the easy child I prayed to God for. This was supposed to be the one out of my two children that I could drop off at a friend’s house on days of Malachi’s appointments. This was supposed to be the brother to Malachi that could yell from the other room “Mom, Malachi is having another seizure.” and help him through those moments because he would be a rock star little brother.
This was supposed to be the one we took home from the hospital days after his birth. This was supposed to be the one to breast feed and to get to wear all those cute newborn outfits. Selfishly, this was supposed to be my chance to experience normal.
With Malachi’s early birth we didn’t have time to really mourn, and we didn’t know any different. But with Levi’s complex airway issues we feel like we just got hit with a wrecking ball that no one saw coming. We had so many hopes and goals this time around.
But in those moments that brought us to our knees with disappointment, grief, and questioning, God brought so many of you to strengthen us. We have felt so much love poured out for our family over the last several years, and it has been intensified over the last 4 months as we face yet another battle.
We have had people fly in and drive in from Tennessee to help with Malachi. We have had family and complete strangers here in Cincinnati give up time to come sit with him for an hour to let me go be a mom to Levi. We have had churches and individuals bless us beyond what we deserve with encouragement, financial gifts, gas cards, and prayers. Sports teams in our hometown put out donation jars. Jake’s high school decided this week to sell a product that had created and give all the proceeds to Levi’s medical bills. We have even been contacted by Angel Flights offering Jake a free flight to Cincinnati when Levi gets ready to be discharged so we can all ride home together in the same car.
Jake and I continually talk about how humbled we are by our community of support. We didn’t deserve it the first go around, and we haven’t deserved it this time either…but God is teaching us so much through each and every step.
When we made the decision to bring Levi to Cincinnati we did so with a huge question mark about how we were going to possibly fund such a huge venture as it was “out of network”. His bills are now up to $1.8 million dollars (before insurance payments of course). Not to mention the looming hundreds of thousands of dollars required for Malachi’s regular care and necessary therapies each year. We tried to listen to God and determine if this step was in His will and we felt so strongly that it was. We tried to make this decision taking the financial aspect out of the equation.
We started talking about fundraising and asking for financial help, but both felt an intense conviction from God about doing so. I heard Him say “Are you not trusting that I will provide?” We made the decision to give our stress and fear to God, trusting that He would provide a way.
Little did we know that God would provide for us exceedingly and abundantly more than we could have ever imagined. We humbly read each note and message that talked about how “God had laid it on my heart to give…” We have experienced and witnessed the provision of God and watching it unfold has strengthened Jake and I’s faith in so many amazing ways. Just last week I got a call from our insurance company letting us know that they re-evaluated Levi’s case and determined that his Cincinnati trip was an “emergency” and that they are covering his NICU stay at the “in-network” rate! WOW!!!
I think many times we overlook the way in which God works behind the scenes. And we forget that our God is in the details. We like to look to Him for the BIG things, when in reality He is working in all aspects- no matter how minute they may be.
You may not have financial needs. Maybe your needs are emotional, relational, health related. But I want to encourage you to give those needs to God then simply sit back and EXPECT God to act. Look for Him in the small things. Look for the ways in which He is aligning things for you.
And to everyone who has allowed themselves to be used by God to meet our needs, we want to say thank you. I started a list early on with all the names of people I needed to write thank you notes to. That list is now three full pages and while I desire to reach out to each of you individually with a thank you, the odds of that happening before Levi’s 10th birthday are slim haha! Please know that we are praying blessings over each and every one of you, and we are absolutely overwhelmed with gratitude.
Please pray for Thursday’s procedure. This will be THE ONE that determines his readiness to go home! We are believing in and praying for a good report.