These last few days have brought a whirlwind of emotions for our little family. There is so much to say in this update. We ARE in Cincinnati, and Levi is stable again but it has not been as easy and smooth as we had hoped. And no surgery has happened.
I also need to mention that I try very hard to not use the blog to vent frustrations or focus on negativity. But unfortunately this post will reflect some of those emotions.
Our air ambulance flight was delayed on Thursday so we didn’t end up leaving the NICU in Chattanooga until around 10pm. The unit let the four of us spend some time together before we had to part ways- Jake and Malachi stayed in Tennessee with the plans to head up the following day. Here are a few pics from our time together Thursday night.
We went by ambulance to the airport and loaded a straight winged, small plane and took off around 11pm. There were two captains, a respiratory therapist, a nurse, and Levi and I. This was NOT Cincinnati Children’s transport crew…they offered but insurance insisted we use one of their preferred providers (aka the cheaper option).
Levi did not seem to like the ambulance ride, nor did he enjoy the flight. He screamed through most of the adventure and I did my best to calm him down but couldn’t. I could tell that he was sweating very badly through his blankets and clothes but there wasn’t much we could do about it as we were mid air. I was very surprised that he wasn’t being transported in a NICU isolette, and questioned them about it in the ambulance but they said they don’t always use them for the little ones.
We landed in chilly Ohio and got on another ambulance to head to the NICU in Cincinnati. I could tell Levi was tuckered out, and his color was a little paler but I just assumed he was tired from so much activity. I was so eager to get him to the unit and get him unwrapped and calm!
There was a little bit of a mix up when we arrived and we were directed to take Levi into the Children’s Emergency Department where we were shown a room. Before I realized what was going on, they had wheeled my premature, NICU worthy son into an exam area with several very sick, coughing, and puking children walking through the hallways and into the rooms next to his. Once I realized what was happening I started being vocal about my concerns but was continually told that this was how they had to admit children…it was “protocol”. I grew more and more frustrated and asked them if the NICU realized that the NICU transfers were being exposed to all of these sicknesses and they assured me that yes, they did in fact and that was acceptable. Obviously later we discussed this with the NICU staff and they were very apologetic and explained that is most definitely not how it should have happened.
**Let me note here that other than this single mix up, our experience at Cincinnati Children’s has been amazing! I would hate to give off any other impression.**
By the time we left the ER department to head up the stairs I was an emotional mess, crying uncontrollably. I couldn’t believe that I had just allowed my son to be exposed to so much sickness without advocating more. We made it up to his new pod and the transport crew moved him into his bed and left.
When they unwrapped Levi they found him drenched with sweat…you could wring out his clothing and blankets. He was completely white and pale and was breathing so hard that his little ribs pulled painfully with each breath. They listened to his lungs and the nurse practitioner heard fluid in his lungs and worried that one had collapsed. She ordered a chest x-ray and the rest of the team worked to get him stable, which he clearly was not.
When we left Chattanooga Levi was very stable. He had been on 4 liters of high flow oxygen- something that was communicated to the transport team twice verbally before we left and also written down.
Cincinnati looked at the transport crew’s report and it noted that Levi had been on 1 liter of oxygen for nearly the entire transport (10pm-2am). Putting him at 1 liter was absolutely dangerous for him. It was a decision that the transport crew should never taken liberty to decide on such a small and fragile NICU child whom they had just met…especially one who was being taken from a quiet NICU unit and placed on two ambulances and an airplane. And he literally screamed and cried for at least 75% of the time. Transport never once unwrapped him enough to see his body color or retractions and made this decision solely based on his numbers.
It was very clearly that Levi had been under-supported on the transport and his little body was just so exhausted from trying to work so hard to breath that it was starting to shut down.
As they worked on him things started to improve slightly…his color started to come back a bit and he wasn’t screaming anymore.
Then his little body had just had enough and he stopped breathing.
Yes, you read that right. Levi stopped breathing and they immediately started to bag him (manually breathe for him). This child was absolutely considered stable when we left Chattanooga and within hours didn’t even have the energy or ability to continue breathing due to poor care on the transport.
Levi was placed back on a ventilator. The last time he required the vent was at his birth. He stayed pretty lifeless for the first night and rode the vent (meaning he didn’t make many efforts to breathe). I haven’t been that emotionally devastated since Malachi’s days in the NICU four years ago. Watching the team huddled around him and attempt to keep him alive was something I NEVER expected to see with Levi. He has always been considered stable and seeing things change so suddenly made me want to vomit and pass out…I was devastated.
Thursday night was a rough one as they worked to find the perfect balance of oxygen support for him. He clearly needed the help breathing but his carbon dioxide output was all over the place.
Levi started to act a little more like himself Friday afternoon but still was very much not at the same level as he was in Chattanooga. He still seemed very tired and worn out. He has had a few brady’s (where his heart rate drops….something that was not an issue in Chattanooga prior to transport). Obviously our plans for surgery were postponed as we know have to focus on getting him strong again.
We worked Saturday on getting him off the ventilator, and extubated him around lunchtime. He is on 6 liters of high flow oxygen/helium combination and still not completely comfortable on it. He is still working pretty hard to breathe.
The other boys and I checked into a hotel today a half mile from the hospital so we can be close. They have allowed Malachi to come into the unit with us which has been a huge blessing.
Malachi did, however, have a pretty big seizure while in the unit today which led to a post-seizure nap on momma…which I did not object to…I miss snuggling him so much.
I tried to hold Levi Saturday for the first time since Wednesday and he started retracting so much we had to quickly put him back.
We have applied to stay at the Cincinnati Ronald McDonald House but they are a popular place with a 16 day waiting list. Hopefully it will open up sooner!
So no exciting updates for you- just lots of frustrations at how things played out. I am still confident that Cincinnati is exactly where Levi needs to be as he needs this surgery but am so sad that he had to endure so much pain and suffering in the transport process. It could have been completely avoided had the team that transported him been more qualified to deal with NICU babies.
The breath has simply been knocked out of the Carroll Family. The excitement of winning the battle with insurance so we could get him to Cincinnati was fueling me and in an instant we felt sucker punched in the gut as we watched him decline and become critical.
On Thursday before we left for Cincinnati I was running around the Ronald McDonald House gathering our things when I came across the shampoo bottle I spoke about last week. I somehow managed to squirt out every last drop and finished it off Thursday morning.
As I thought about that stupid bottle of shampoo that had made me so emotional the week before a Bible story about Elijah and the widow’s jar of oil came to mind. And as it did I heard message very clearly from the Lord…
1 Kings 17:7-16 tells the story about Elijah coming into a city and came across a widow who was gathering sticks. The Bible tells us that Elijah asked her for some bread and the woman replied: “12 But she said, “As the Lord your God lives, I have no bread, only a handful of flour in the bowl and a little oil in the jar; and behold, I am gathering a few sticks that I may go in and prepare for me and my son, that we may eat it and die.”
WOW what a sad reality this woman was facing. Her situation was so bad that she was actually having to plan a final meal for her son, expecting them both to die of starvation shortly after. She had exhausted all other options. Spoiler alert- in the end she made Elijah some bread and because of her obedience God allowed the flour to never empty and the jar of oil to never run dry.
As I thought about this story I couldn’t help but focus on that jar of oil. It never said that God filled the jar of oil to the brim…it simply says the jar of oil never ran dry.
I laughed to myself when I thought about this and thought about Jake and I. We have been at that point so many times of feeling utterly and completely defeated by life and the challenges we face…but God, in His love for us, never lets that jar of oil run out. He continues to provide for us day after day… in the form of energy, strength, guidance….and each day we find just enough oil in the bottom of that jar to make it through another day. There is never a surplus of that oil- just simply enough.
And we try to live each day trusting that God will replenish that oil as He sees fit. This week has already been a challenge as we stare at the jar wondering if we will have enough, but we thank God for His omniscience and His desire to share His strength in times that we are helpless and weak.
I am hoping to have a good report for you in the next several days, but Levi needs your prayers right now. He is trying hard to build his strength back but needs some time and a touch from God.
And pray for our strength as a family.
Jake, Leah, Malachi, and mighty Levi