We are fully recovered from our exciting week last week with our out of town family. I thought I would share a few sweet pictures from their visit.
Malachi in particular loved sharing his house, toys, and brother with my family. Each morning he woke up so excited to see them again! As they left on Tuesday and we said our goodbyes I made sure to explain to him that they were going back to their home in Ohio. We waved goodbye from the driveway and came back into the house. After about 5 minutes, Malachi realized that they were truly gone and he started to cry.
I snatched him up and I let him cry on my shoulder as we talked about how much fun the week had been. He is such a sweet little boy. And he understands SO MUCH.
Flashing back to our last Cincinnati visit, the ENT and pulmonologist came up with a list of three things that needed to happen for Levi to continue avoiding the trach.
- Grow well
- Pass a sleep study
- Get sick safely
It was predicted that when Levi got his first respiratory infection that he would be in the ICU and back on the ventilator. His vocal cords are already close together, making it hard to breathe so if they swell larger you can imagine the impact that could have.
As I mentioned last week, Jake came down with strep and a viral infection and was sent to a hotel and a family members house from Friday to Tuesday night. I cleaned the house like a crazy lady, sanitizing and laundering everything I could but when Tuesday night rolled around I could tell that Levi was coming down with something. He cried and fussed all night long, clearly in pain. Tylenol helped but as the day went on I could tell that he had come down with a cold and a sore throat.
I was so anxious and kept him hooked to his pulse oximeter to measure his oxygen saturation. He did pretty well but had enough dips to warrant me turning up his oxygen to 1/2 liter (from 1/8). He is still having a few coughing fits here and there but sailed through his first sickness without an ICU stay! PRAISE THE LORD!
While I dealt with sick Levi I just assumed that Malachi would come down with the same thing. Malachi’s immune system is so compromised and he is very susceptible to sickness. When he gets sick we have to take him to the hospital sometimes daily (an hour there and an hour back) for chest x-rays as he develops pneumonia easily.
But as the days went on, Malachi was his happy and silly self. He figured out that if he screamed loudly that brother would wake up crying so that became his game of choice, giggling after each successful attempt. Since he was doing great I still took Malachi to his horse therapy Wednesday and even sent him to school for two hours on Thursday.
Friday morning he woke up with a runny nose so I assumed he was officially catching the viral bug but with some allergy meds that went away. Just to play it safe I kept him home from school.
Here is a photo from his first big day in Kindergarten; he wasn’t in a picture taking mood so this is the best I could do:
So let’s talk about the big meeting with Levi’s pulmonologist on Tuesday morning.
We met to talk about the results of the sleep study, and in my Leah way I tried desperately to read his body language as he entered the room. Unfortunately for me, this doc is hard to read so I started to get anxious.
He explained that he was hoping for some black and white answers but instead we got even more gray area. He said he had been talking at length via email with the Cincinnati ENT and pulmonoligst and they had come up with a plan. This part makes me a little anxious as I have always been the middle man between the two offices. I like the concept of each of them forming an opinion apart from the other and allowing me to hear all sides. It was kind of my way of getting a second opinion.
Good news: one of the biggest concerns from all doctors involved was Levi’s carbon dioxide retention. The sleep study showed that he is exchanging gases well when he sleeps and his CO2 is definitely in the safe range. Levi also was not having any severe apnea (stop breathing) spells.
Bad-ish news: Levi’s hypopnea (short and shallow breathing) is causing brain arousal moments at night which will keep him from getting quality sleep. This can affect his brain development and growth so it is concerning.
Take away: all docs want to do another sleep study and this time they will INCREASE his oxygen while he sleeps (up to 2 liters), hoping to find a happy number that will allow his brain to relax more.
Ugh. Another sleep study. The thought of it makes me nauseous. Just Ugh.
We are waiting on the scheduling department to call us with a time and date. Cincinnati mentioned us coming up there to do the study followed by another procedure to see how things look, but if we can avoid a trip there we will try. It would take them several days to read the results of the study, then several more to get us into the operating room and that is a complicated life for us Carrolls.
When the pulmonologist got ready to leave he did something he has never done….
He superstitiously knocked on the wall behind him and said very quietly through clenched teeth: “I think we still may be able to avoid the trach.” He still seems a little unsure but him verbally telling me that it was still a possibility to avoid it gave me some wind beneath my wings.
This week we will meet with Malachi’s surgeon to talk about his g-tube. It is another appointment that makes me sick to my stomach. I hate the idea but know it is time, especially with his big upcoming hip and foot surgery.
Back to some happy thoughts…
Malachi played in his first soccer game on Saturday and had a blast!
He is always cautious and quirky his first time trying something new, and this was no exception. But at halftime when I asked him if he wanted to keep playing he exuberantly signed yes. Ten minutes later he told us with his signs that he was done and sat out for a bit. It is an overwhelming environment with all the noise and chaos, but he will adjust over the next few weeks. When I talked to him tonight about playing next week he giggled and signed YES.
Here is a fun video for you:
I have been a little emotionally fragile all week as I have been dealing with lots of sleepless nights, not a lot of help from Jake as he is still recovering, and a rapidly moving life with lots of places to be with lots of people counting on me. When I get into this fragile mode I know I am due for a pity party with lots of tears. It’s coming soon.
Tonight I attended a women’s event with the ladies from my church. It was a casual gathering at someone’s house but as I sat alone without any children in sight I started to get tight chested and struggled to breathe. I knew that I was physically okay but mentally I was absolutely freaking out. I was able to talk myself through it before causing a scene but that is the closest I have ever been to a panic attack, if that is even what it was. I am just not used to being without the boys and having that burden of responsibility lingering in my thoughts.
My control freak side has been in overdrive today adding to the buildup. For example, my sweet husband got Malachi ready for church this morning but I just couldn’t handle the mint green shirt, neon orange bib with sharks, and bright red socks. Nope, nope, and nope.
But more time at home this week has given me more time to create thoughts and dwell on them. This week’s thought focus has been on nature.
Recently I put up a hummingbird feeder right outside my living room window. Yes, random, I know. But prior to hanging the feeder I would be sitting on the couch with a kid and a hummingbird would appear in the window, staring directly at us. It was so odd to me and became so frequent that I figured a feeder would get some attention.
And it most definitely drew a crowd within an hour of me hanging it up. I have been utterly fascinated by them as I watch their behavior. I watched as their wings moved so fast you couldn’t see them and I wondered how they never tire. I watched them fly up to the feeder for a quick sip, anxiously glancing around them each time, then seconds later darting off back into the sky. What an exhausting life that must be.
Then one day it hit me…I AM A HUMMINGBIRD! I live in a world where it is never safe to stop flapping my wings. I can never relax, never shut off, never rejuvenate. If there are moments to take that sip of water I pounce on them, but all while looking around anxiously waiting for something bad to happen because I let down my guard.
It is exhausting! Each morning Malachi wakes me up around 3am by having a seizure. I hear him over the baby monitor and rush in to get him upright before he vomits and aspirates it into his lungs. I take him into the living room to try to help him burp instead of vomit (the trigger for the seizure) all while listening closely to Levi’s alarms to make sure he doesn’t have a breathing episode that requires my attention. After an hour or two up with Malachi he ends up in the bed with me- I have to carefully roll him onto his side in such a way that his already dislocated hips won’t hurt and he can’t smother himself on the pillow. I use my face to prop his face in a safe place and I use my knee in between his knees to keep his legs and hips comfortable. He will usually sleep like this for another hour and a half, but that is never guaranteed- some nights last week I got a total of 3 hours sleep, others around 5-6.
When we wake up for the day I have to administer 6 doses of medications to the boys, prime and setup a new feeding pump bag for Levi, change medical tape and gauze, change diapers, change outfits, and take an hour to feed Malachi. It is a constant flurry of action. If I want to try to shower I have to take 5 trips into the bathroom, 3 with equipment and 2 with each boy. Then repeat the process to take them back out.
Then getting them into the car requires packed coolers, feeding pump bags with ice packs, emergency bags, oxygen tanks, gear, and at least three trips to get everyone and everything into the car.
I am a hummingbird y’all.
And as I went down this rabbit trail of the hummingbird being my spirit animal of sorts, I started thinking about the purpose of the hummingbird. Why did God create them? What unique and individual job do they do that another species of bird could not fulfill?
Then that led me to other things in nature, like butterflies and sloths. What in the world do those things do?
I started thinking about all of the odd things in nature that God saw fit to create…things that don’t seem to serve a single purpose aside from the fact they are pretty cool to look at. Things that you and I look at and think WHY?
And then it hit me…
My Malachi is one of those “things”. He is one of those children that will never become a “contributing member of society” in earthly terms. He will in fact deplete lots of money and resources during his time here on earth. But OH MY what a purpose he serves.
Hummingbirds, butterflies, sloths, bees, spiders…they all serve a unique and special purpose. We have learned over the years through scientific studies that without these things our ecosystem changes. Even if their purpose is a tiny and minute one, it still plays a huge part in the big picture of nature. God knew exactly what he was doing when he designed and created each one.
When we look at kids like Malachi we find ourselves digging to come up with their “purpose”. But like the little things in nature, each of these beautifully unique individuals brings something to this world that you couldn’t get any other way.
In what other ways do you get to see firsthand a love that is unconditional and limitless? In what other ways are we given an opportunity to see such a pure and innocent spirit? Malachi reminds us of so many things we often forget…things we take for granted.
Malachi’s life also gives you and I the rare chance to practice selflessness. To take care of another person’s needs, and to gain a new perspective of the things we have to be thankful for. He reminds us of God’s goodness, God’s mercy. His blessings and how he can make beauty from ashes.
While Malachi may not be able to physically do much in this life, his purpose is monumental.
Malachi’s life is a reflection of Christ. In him we see those characteristics we are all called by God to show to others…love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, and self control.
Malachi is here to teach us. And that is a pretty special purpose.
Sometimes when we hummingbird our way through life we forget to rest every now and then to note the beauty of our creation. The detail that God took in creating every unique aspect of each of us. And we forget that God has a calling on each of our lives.
There is something that each of us is MEANT to do in this world. There is something that cannot and will not function to its fullest potential without our presence. What are you here for? What special job did God design for you to do in your time here on earth?
You need to know that these blogs are written in the middle of the night, most of the time when I am utterly exhausted. I still feel called by God to write them each week, but I always laugh when I read them back. I can already see myself laughing tomorrow as I realize that I wrote about sloths. Why in the world that one came to mind is a mystery.
The verse I want to share is completely unrelated to my nature ramblings, but is one that I enjoyed reading again this week. I have a little green Bible that belonged to my grandpa who passed away in 2013. I love looking through the margins and seeing where he meticulously made marks with his pencil, noting things that stuck out to him. The Bible is the Message translation, so I don’t use it too often for studying but I do like how it worded this scripture.
Colossians 3:1-2 “So if you’re serious about living this new resurrection life with Christ, act like it. Pursue the things over which Christ presides. Don’t shuffle along, eyes to the ground, absorbed with the things right in front of you. Look up, and be alert to what is going on around Christ- that is where the action is. See things from His perspective.”
Please pray for the boys this week as we tackle a list of appointments. Pray that Levi continues to heal and that his vocal cords suddenly awaken. Pray that Malachi’s ligaments and tendons stop receiving wrong messages from his brain and start to loosen back to normal. Pray that his seizures stop and that he can be comfortable and at peace throughout his day. Pray that both of the boys receive supernatural healings and that Jake and I are each given an extra dose of supernatural wisdom in knowing how to care for such precious boys.
And pray that they can sleep. That God can allow each of our hummingbird wings to stop moving long enough for healing and brain growth.
Thank you for choosing to be a part of our journey.