In true Carroll fashion the pendulum swung and I am typing this entry from Malachi’s bedside in the PICU.
Both boys ran fevers at the beginning of the week and Levi started bouncing back by Wednesday. Malachi immediately required oxygen but was comfortable enough that we decided to try to keep him home. We have an oxygen concentrator that goes up to 4 liters, a pulse ox machine, suction machine, cough assist, nebulizer, and so many other pieces of medical equipment that allow us to stay away from the hospital a little longer than most. But times like this week it still just isn’t enough.
Almost immediately, Malachi’s lungs sounded crackly so I did a Telemedicine appointment with his pulmonologist and he started him on antibiotics to combat any pneumonia that might be brewing. I was feeling confident and comfortable with our plan and Malachi seemed to be responding well to everything we were trying. We let him open his adapted dice roller and Chutes and Ladders early and we spent the week playing games, reading books, and trying to keep Levi entertained.
But as the week went on Malachi’s work of breathing increased and I watched his body start to heave for air. We watched him like a hawk for several days but on Christmas Eve we noticed a blue tinge to his lips and decided it was time for a visit to the emergency room. I asked Malachi “Are you scared because you can’t breathe?” and he signed YES YES.
There is a delicate window for us to make these decisions. We don’t want to overreact and go to the hopsital too soon, as Malachi recovers best in his environment/home. But if we wait too long and it becomes an emergency situation we have to call 911 as we are one hour away from the children’s hospital. The portable oxygen concentrator only goes up to 3 liters and we were beyond its capabilities so we dragged out the large oxygen tanks to get us there safely and made the drive.
The extreme cold temperatures in our area impacted the hospital in a huge way. Some of the heaters shut down, a water pipe burst, and a sewage pipe also burst. When we checked into the ER they were in the process of rerouting most of the patients in the children’s section to parts of the connected adult hospital. It was mid 60s in the room we were placed in and Malachi started to spiral pretty quickly as they ran diagnostic tests (blood work up, viral panel, chest X-ray) to figure out what was going on.
Malachi was diagnosed with RSV and his blood gas showed that he was retaining too much carbon dioxide which leads to acidosis. The only way to balance out those levels is to “blow” the extra CO2 out of his lungs and so they started him on 20 liters of very high flow oxygen. Obviously this much flow through your nostrils is uncomfortable and hard to get used to, but the immediate relief it provided was well worth it.
Malachi needed to be admitted to the PICU but they said that all of the beds were full due to the flooding situation. They explained that we would stay the night in the ER and move up the next day. As Malachi continued to worsen I quickly grew uncomfortable with the situation. He was going through spells of extreme agitation and heaving hard trying to breathe, even with the high flow. I started getting a little panicky myself, feeling like I was the only solid set of eyes on him in the busyness of the ER. We weren’t being routinely checked on and my anxiousness grew. Seeing Malachi go downhill so quickly made me emotional and the doctor finally came in to talk.
Me: He is making me anxious with how hard he is working. I am just afraid he is going to run out of energy and possibly code.
ER Doctor: So let’s talk about that. What do you want me to do if that happens?
Ughhh. I understand that the question has to be asked. I get it. But in that moment I was trying to convey that I was uncomfortable with how fast he was spiraling. An appropriate response would have been something to calm that or find a solution with me. Not immediately jump to the question of should we have life saving measures in place. That is not at all a conversation that a typical family would have in that moment.
Some people have DNR (Do Not Resuscitate) orders, but that is certainly not how our family operates. Obviously she didn’t know that. But her timing of that question hit me in the wrong way.
Immediately in my heart I was reminded that I needed to be an advocate for Malachi. But the truth is that regardless of how much I advocate, blog, and share our lives there will always be a percentage of the world that will fail to see value in the Malachis. But oh, what an undeniably beautiful and unique blessing Malachi brings to the lives of everyone who meets him.
Even though I don’t think the doctor meant harm I couldn’t help in my heart allowing it to impact my feelings of being “unsafe” in the ER. My mind started questioning, “If he were a typical child would they have made space for him in the PICU?” I am fully aware that maybe that is an unfair stance, but I am being transparent with you all. And I am very tired and fragile tonight haha.
4am rolled around Christmas morning and one of the doctors from the ICU came down to assess Malachi. She said they had a room ready for him and within the hour we were transported. I felt such a peace overwhelm me as we settled into the new space, knowing that he was in good hands and I didn’t have to carry the concern alone. The PICU at our hospital is great at including parents as part of the decision making process.
As far as Malachi’s respiratory status, he is currently stable and we are trying to get his carbon dioxide level and oxygen needs back to safe ranges. This process is different for every child, but as long as he is requiring the high flow we will remain in the ICU for close monitoring. Malachi is interactive and stable, just not healthy enough to leave the support of the hospital. We are seeing an increase of his seizure activity as we are trying to get food into his body again, and that is always a delicate thing to maneuver and continues to be one of our biggest daily hurdles.
In complete and total irony, the project Jake and I chose for our Christmas this year was writing letters and sending gifts to parents in the ICUs in this hospital. We have been in this position before on Christmas Day and it is such a hard road to walk. We talked as a family about what we were doing and Levi was so excited that we were helping other mommies and daddies who have kids in the hospital on Christmas. We explained that Jesus tells us to love one another and that is why we look for people who need to feel that love. As I explained all of this too him he started to get teary eyed with empathy, especially when we talked about his first Christmas in Cincinnati Children’s. Jake, Malachi, and I were living in a hotel next to the hospital and the emotional wear that day took on me was great.
Levi’s little heart just continues to grow larger for others. One of the other “traditions” we do each Christmas is pack up toys in the playroom and give them to other kids that might need them. We did this project a few weeks ago, but this week Levi found some empty boxes and packed them up. He excitedly brought me in to show me and asked if I could take them to other little kids who don’t have any. Sweet boy.
Our boys don’t have the tradition concept of “Christmas Morning” in their heads so we are able to get away with celebrating it on a later date this year when everyone is home together. But we did allow Levi to open his big present to help him handle my absence a little better. I had Jake FaceTime so I could see his reaction and it was so sweet. I did replace the picture of me in the corner though as I look like I have been in a cage fighting match and lost.
This time of year I can’t help but let me mind drift to Mary. I know I have shared similar thoughts to these in past years but it is fresh on my heart today.
Luke 1:28-31 “The angel went to her and said, ‘Greetings, you who are highly favored! The Lord is with you.’ Mary was greatly troubled at his words and wondered what kind of greeting this might be. But the angel said to her, ‘Do not be afraid, Mary; you have found favor with God.’”
That was the moment that Mary’s calling was revealed to her.
This got me thinking about the moments leading up to Malachi’s birth that were foreshadowing moments of what was to come. Things I missed in the moment but looking back have such clear fingerprints from God.
13 year old Leah riding her bike to a farm down the road looking to earn some summer cash. What I didn’t know was that stable was used for helping disabled children and adults ride horses. I will never forget the Table of Contents in the information packet the owner handed me, telling me to go home and look through the packet and see if I was interested in volunteering. Each chapter was a different disability and it opened up a world I didn’t know existed.
College aged Leah, wanting to be a journalist or a writer. But I continued to feel a prompting from God to pursue the path of special education teacher.
And then there is the night of Malachi’s birth. I was laying in my bed in so much incredible pain when suddenly my feet hit the floor. I heard a clear and audible voice command “Get up and go”.
How special is it to realize that God has been preparing you for the very difficult roles He knows He is going to give to you. He is strengthening your muscles in subtle ways for the load He has hand chosen for you to carry.
As I look back on those moments I absolutely see the hand of God, but I also see something else in them. The step of obedience. Each one of those moments had a pivotal point of decision making or acceptance of the call.
And Mary did just that.
Luke 1:38 “‘I am the Lord’s servant,’ Mary answered. ‘May your word to me be fulfilled.’ Then the angel left her.”
How often do we say these words to God?
I am the Lord’s servant?
How often do we act as the Lord’s servant? Where our desire to serve and please Him is greater than our desires for autonomy.
So while I naturally mourn another less-than-normal holiday for our family I also recognize that there are opportunities for obedience within this week. There are moments where I can reflect God to others. There are moments where I can choose others over self. There are opportunities for me to be the hands and feet of Jesus to my son.
I am the Lord’s servant. May your word to me be fulfilled.
May we all act in humble obedience to the hard and beautiful things God calls us to. And may we do so with the grace of young Mary.
Please keep our family in your prayers. Healing for Malachi and peace for Levi as he deals with absence.