This has been an overwhelming week for me so bear with me as I try to gather my thoughts well enough to communicate them.
Right after Levi’s birth we were told that he simply had a stridor and that lots of kids outgrow those. After about two weeks we learned that his stridor did not exactly fit into that category of a “typical child” and learned that he had something called paradoxical vocal cord movement meaning his vocal cords shut every time he tries to take a breath. The only treatment option we were given was a tracheostomy.
Jake and I have just felt so unsettled about agreeing to do the tracheostomy without first exhausting ALL other options. If our research led to dead ends, we would readily put a trach in Levi as he needs some form of intervention for him to live and breathe.
So Monday was phone call day as I called some nationally known hospitals with amazing technology for airway issues. My first call was to Children’s Hospital of Philadelphia (CHOP) and I explained our situation. Within three minutes they connected me with the nurse practitioner of the head surgeon…this alone had to have been a God thing. If you know anything about the medical world, opportunities like this one are uncommon and rare. She and I talked for nearly an hour about Levi’s case and she said he sounded like a candidate for a new procedure they are doing called an Anterior Posterior Cricoid Split. Now before you google that term you need to know that this is a surgery that is done for a completely different purpose in adults and has been adapted to help with bilateral vocal cord paralysis issues like Levi’s.
When I say “new procedure” I mean new. CHOP has done 3 of them and were successful in avoiding a trach in two of the cases. They learned the method from Cincinnati Children’s Hospital who has only done 10 of these with 6 being successful.
She told me that they would be more than willing to look at Levi’s medical records and bronchoscope videos and decide if he was a candidate. If he is a candidate, they will arrange for a NICU to NICU transfer and send a straight winged airplane down to pick him up. Needless to say, I was VERY encouraged when we ended the phone call.
While we had a great lead with CHOP, I decided to do another phone call to the second hospital on my list and called Cincinnati. I was taken straight to voicemail only to have the secretary call me back a few hours later and explain that they wouldn’t discuss the case with me and would have to have our NICU team call theirs. I saw that as my closed door and decided that CHOP was the route we would attempt.
My plan was to work on gathering the medical files needed and sending them to CHOP immediately, but knew it would take a few days and thought it would be worth asking the NICU team about to see if they could help expedite the process. On Monday morning during rounds I explained our findings and they agreed to help. I was ecstatic with hope!
The head of pulmonology came up to see us later that afternoon and asked about the procedure. I pulled up a few medical articles explaining it and he was intrigued. When I mentioned Cincinnati he told me that he had contacts there in the ENT department and would contact them to see if they would consider taking on Levi’s case.
We would personally prefer Cincinnati, as they have more experience with this particular surgery and Jake and I are both from that area making the housing situation a bit easier.
Monday evening I was overwhelmed with joy that we may have found a solution for Levi!
On Tuesday things got a little more complicated. Last week Levi had an MRI and an EEG to check his brain and both showed cerebral abnormalities. On Tuesday the neurologist came by to discuss what was happening with his brain.
The imaging shows that there are several areas of brain damage on both the left and right side of his brain. Some of the brain damage is old and some of it was newer (1-5 days). Levi has been diagnosed with Hypoxic Ischemic Encephalopathy (HIE). If you have heard this term before it is probably because Malachi has been diagnosed with the same exact thing…and it isn’t a good diagnose to receive AT ALL.
Hypoxic means inadequate oxygen, Ischemic means inadequate blood supply, and Encephalopathy means the brain has been affected. So HIE essentially means that at some point Levi lacked oxygen or bloodflow and his brain was damaged. We are relatively confident that he never had a Hypoxic event as we have been in the NICU and would have noticed that on his SATs and intervened. So they are leaning towards thinking he has had some blood supply issues, like maybe clots that have caused two different waves of brain damage.
We absolutely did not see this coming. At all.
I talked with the neurologist about what to expect with the location and extent of the damage. He said we should expect some form of cerebral palsy in Levi, although not as severe as Malachi’s. He also said while seizures are not as likely, we need to watch him closely. He also said that he does not feel that the brain damage and the throat issue are related in any way.
He ordered an MRA (to look at arteries) and an MRV (to look at veins) as well as an echocardiogram to check his heart. The echo came back clear, and we should know the results of the other two tests tomorrow. They are looking for any areas of blood flow issues that would explain the ischemic event we are seeing the results of.
Once those test results come back they want to do a consult with hematology to have them try to find the blood issue we are dealing with. Since we don’t know where the problem is there is a chance that it could happen again, leading to more brain damage.
Things just got more complicated.
I know this sounds crazy, but the news of Levi’s brain damage didn’t necessarily devastate me. Now don’t get me wrong- I cried uncontrollably in anger at the situation that evening but even now my heart feels at peace about it. We have learned through Malachi that the brain is an amazing thing and can rewire itself. So even predictions from a neurologist can be wrong. And let’s say he is spot on with his predictions and Levi does have CP, our family is no stranger to the challenges that diagnosis can bring. God has been equipping up for four years with Malachi, and I am confident he will do the same for Levi’s unique needs.
And just to clarify, we know that Malachi was born without a heartbeat and required 15 minutes of CPR, causing his HIE event. There is not a genetic link that caused them both to be diagnosed with HIE.
We had a Patient Care meeting today with about 10 of us in the conference room. I wanted to see where everyone was at with the phone calls and file transfers that we had requested earlier on in the week. Unfortunately we learned that no files have been sent and no contacts have been made with CHOP or Cincinnati. We were told that they would like to gather as much information about the new neurology issues before they will make contact. I explained to them that the neurologist is confident that the two issues are unrelated and we would like to proceed with reaching out to other resources to just see if he is a candidate for the new procedure. We were told that when they receive the results from today’s MRA and MRV they will send an email to Cincinnati and start there.
The more we dig the more we find, and the mystery just gets bigger. Levi’s pregnancy was monitored so closely by so many different doctors. Appointments every Monday, Wednesday, and Friday. Shots every day. Ultrasounds once a week. Yet we find ourselves surprised…and so very confused.
And as we spend time doing all this research and testing, Levi is simply just living in the NICU. No progress is being made in any shape or form. Just a life of IVs, tests, and mommy trying to get as many snuggles as she can. We have been here for three weeks and he is in the exact same situation as he was at birth.
I am emotionally exhausted. I don’t even know how to describe it. Every day I go to war against my emotions, because when I start to lose control of them it sucks every bit of my energy out. I get overwhelmed by anxiety, anger, and a deep sadness from a mommy heart that just wants to be with my children together, in the same room, wire and machine free.
I can’t describe to you the overwhelming sadness of having to leave your child each night. It is just so unnatural to have to walk away from him. He is a piece of my heart and I feel so much guilt when I am away from him. With Malachi’s NICU stay it felt different because most of the time he was on medicines that kept him from being fully aware of our presence. But I am confident Levi knows when I am by his side, so that makes me confident that he knows when I am not.
Oh how I love that boy so much. There is something so special and unique about him. His eyes are more beautiful that words can describe and his personality starting to come out. He melts my heart every single day.
Here is a video of him interacting with daddy, whom he dearly loves:
I am basically a ticking time bomb when it comes to emotion these days, and the different things that spiral me out of control are so random. This morning I started crying in the shower as I picked up the bottle of shampoo only to find it nearly empty. Before Levi was born I stocked up on all household goods so we would be set after his birth. I remember stopping by the house on the way to the Ronald McDonald House two days after his birth and picking up that shampoo bottle, saying to myself “This should be plenty since we will be home within two weeks.” But here we are, one bottle of shampoo down and no sign of home anytime soon.
If we hypothetically did the tracheostomy tomorrow, we would still be here for another month. This NICU journey is far from over, which is something I am having a hard time coping with.
Changing gears now…
Malachi has had a fun week with a few fun visits with friends. On Tuesday his teacher from school took the day off and took Malachi to the aquarium with her son. What a blessing that was to us as Jake and I were able to visit with Levi together, and Malachi loved the adventure.
He even got to sneak into the NICU again to visit with his baby brother. He was absolutely smitten as you can see from these photos:
And here is a sweet video:
Levi now has a private room in the back of one of the pods.
I am healing well enough to start sitting Malachi on my lap for short spells. Here is a video of him being super silly and snuggly. We miss playing together so much:
I am sure you are wondering why I chose such a random title for this post. But that word is so special to me right now and I declare it over my son.
In Mark 7 the Bible tells a story about Jesus healing a deaf man with a speech impediment. It says “and looking up to heaven with a deep sigh, He said to him “Ephphatha!” that is, “Be opened!”
I have always had an imaginative mind, and when I read this verse I can’t help but picture the scene. I love words- and I love the picture the author paints….Christ looking up to heaven and sighing deeply before making his healing declaration.
Ephphatha- Be opened!
That is my declaration over Levi’s body- over his blood vessels, over his throat. My prayer is that God miraculously heals him and opens up his airway in a complete and inexplicable way. And when I speak this over him I find myself, like Christ, looking to heaven and sighing the word with every ounce of strength and faith I can muster.
A friend came up with an idea to have everyone that is willing set their phone alarm to 5:57 EST (the time of Levi’s birth) and pray for him at the same time each day. Let’s pray together for his healing. Let’s declare Ephphatha (Ehf-uh-thuh) over his little body and ask that God heals him completely.
And finally on to one final note…
Many people have been messaging me asking what they can do to help. Honestly, there isn’t much that anyone (ourselves included) can do right now aside from pray. We don’t have a Gofund me account set up as we want to reserve that for a time when our family is absolutely financially desperate for help and have no other options but to ask for assistance from friends and family. But many people have asked about contributing financially to the cost of medical bills, and we are very touched by the request. Our church has offered to collect any encouraging notes, donations, gas cards, etc and get them to our family. If you feel led to give, please see the information below.
First Baptist Church
ATTN: Levi Carroll
PO Box 326
Benton, TN 37307
Thank you for continuing to pray with our family for another miracle. God is able. And please continue to pray for wisdom for our family as we prep for another patient care meeting next week.
And let me end this entry with Levi’s angry face, because it is just too cute not to share…