It seems almost unreal, but our family is finally home!
Yesterday morning an organization called Angel Flights flew Jake from Cleveland to Cincinnati and the four of us made the 5 hour drive home.
The drive itself was about as chaotic as we expected with lots of messes. I will allow you to use your imagination on that one haha. But coincidentally Levi got to have his first bath at home when we walked through the door!
The last 12 hours have been so surreal- almost like a figment of my imagination. Between the two boys we were up and down all night, but we are together! This morning all four of us laid in the king size bed and just soaked in our togetherness.
Malachi is a different kid with Levi around. He is very serious as he listens to his brother’s every move and is very concerned when Levi cries. Levi doesn’t quite share the same infatuation with Malachi but tolerates him well.
I took this video this week of Malachi playing his piano for Levi:
We are one happy family.
Yesterday on our drive we needed to feed Malachi (a 45 minute process) and Levi needed to get out of his car seat. We tried to find the emptiest parking lot we could find at lunchtime on a Sunday and ended up at a random Japanese steakhouse in the middle of Kentucky. Jake and I couldn’t help but laugh as we wheeled in Malachi with a dirty diaper, Levi covered in vomit in his car seat, a feeding pump, and a giant cart on wheels with two large tanks of oxygen.
They settled us in the corner of the restaurant and as we sat there, a conglomerate of choas, I started to tear up. When I looked over to Jake he was doing the same and together we both breathed a sigh of relief, joy, and victory. For months we have fought and fought for our son, for our family. And here we were, all together…granted we are literally a rolling circus, but we are together.
To be honest, I held my breathe most of the day yesterday. As much as the devil has been after our family I wasn’t so sure he would let us get home without a fight. But as we got closer and closer to home and I saw those Tennessee mountains that lead home I let my guard down and allowed reality to sink in. And I couldn’t stop smiling.
This week we will be finding our groove and cherishing every moment. Our church family has organized meals for our family, friends have cleaned the house, and we have zero plans other than sitting in our home as a family of four.
Now for some medical updates.
Levi had his MLB (throat scope) on Thursday afternoon and while it does look like the area is healing very well, there was some granulation tissue, which is basically tissue that forms on a healing wound. So instead of his airway being smooth, there are now some bumps which are catching some of his secretions instead of letting them smoothly go down his throat.
His airway has tightened a bit since the last scope. As it has healed it has pulled in and is more narrow then last week but it still seems open enough to allow him to breathe trach free.
Because of this, Levi will need to have another throat scope done in three weeks (April 11th). It will require us to stay at least one night, which I am not looking forward to one bit. But being able to go home now is a blessing!
Granulation tissue can also make his breathing louder. Right now he sounds like a goose and has a low pitch noise when he breathes. Aside from the noise, he is still doing very well with his breathing and is on 1/8 liter of oxygen, which is not much at all.
This week I was educated on Levi’s oxygen, feeding pump, g-tube, and pulse oximeter. We learned that Levi likes to swing and loves to be held. At all times.
We also learned that Malachi is one awesome big brother. He loved the opportunity to be near Levi every day and would get excited each morning when I told him where we were going. I continually talk to him about what a Big Brother is and how he has to share his toys, books, and his mommy. I also let him “hold” Levi and when I took him away Malachi signed “more” so I put Levi back on him again. Malachi even moved his arm around Levi and rested it on his belly. He is so excited to be able to interact with his brother.
I have been trying to involve Malachi as much as possible, just like you would a typical child. I will hold Malachi close to Levi’s swing to let him rock the baby. I even put him in the bed with Levi so he could grab his little feet, and Malachi thought is was hilarious that Levi was kicking him.
Things are about to get seriously crazy for our family. In the next month and half I will be cramming in all of Malachi’s specialist appointments that we have missed over the last four months, and adding in all of Levi’s specialists. Aside from his therapies we will have about 16 appointments to travel to…Nashville, Cincinnati, Chattanooga, and Cleveland.
That means I will need to figure out quickly how to cart a 5 year old immobile toddler, a 4 month old baby, oxygen tanks, pulse ox, feeding pump, and all the other gear that babies and kids need. I will also have to give 14 different doses of medications each days between the two boys.
I have had a lot of God moments this week as I reflect on our nearly five month fight for Levi. I don’t know if you have ever been overwhelmed with the presence of God but it is an amazing feeling. I continually find myself speechless, only being able to utter the words “God, you are good.”
Last night as I laid awake and listened to Levi’s squeaky little breaths I thanked God. Although we have been through the ringer, I can’t help but feel that God’s hand of protection was on our family. The road was rough, but I still feel that we never left the palm of God’s hand and he softened some of the potholes in the road.
I started thinking about the story of Job and how when Satan decided to test Job, God put parameters on him. Even in times we are under attack if you are a child of God it doesn’t matter what the enemy has planned. God’s plan will always supersede the plans of the enemy.
Psalm 23:4 “Even though I walk through the darkest valley, I will fear no evil, for you are with me…”
I would love to write more but there is a really cute baby staring at me and I have spent too many days not being able to pick that boy up. Thank you for sticking with us through this journey and for praying without ceasing for our family. Please continue to lift us up in prayer as we navigate life at home with our unique and amazing little boys.
And don’t worry, I will continue to update the blog each Sunday! It wouldn’t feel right to leave you all hanging!
Plus these boys have more mountains to move!