A Remy Update & Request for Continued Prayer
Introduction
Firstly, I’d like to thank the thousands of you who have read, prayed for, and reached out to our family regarding our (now 10mo old) Remington. The response to my first article was overwhelming, and it is a huge factor in giving me the strength to continue to write updates. As I prayed this morning, Christ’s burden is light, and His shoulders broad. I pray that as I continue to write even this very article, that He would shoulder our burdens and carry me through to the last sentence.
If you are just coming into this whirlwind, I ask that you go back and read my first article regarding Remy. It will provide helpful context to the conversation, as it’s not my goal to repeat information, but rather pick up where that story left off and provide updates on the past few months of events. I still aim to have, as one of my main goals, my readers have a better understanding of our challenges with Remy. I’d like to bare our hearts to you, not for the sake of victimhood or to make you feel bad for us, but rather to have you join in prayer with a fuller understanding of how Remy’s multitudes of complications affect our lives day to day.
The Updates
Respiratory
I’ll be honest, so much has happened that I had to go back and re-read my last article to see where I need to pick up! One of the most pivitol changes occurred one terrifying weekend…
Since Remy was born, we’ve had him wired for sound. We have video, heart rate, and oxygen monitors on him every time he sleeps. With his brain injuries, he’s at a higher risk for seizures, and we didn’t want there to be any sort of emergency that went unnoticed. Remy would routinely drop his pulse ox into the 70%s (normal 90%-100%), but either on his own or with light arousal, he’d come back up on his own. We had supplemental oxygen for him at home for those bad nights when he needed it, but rarely had to use it.
One weekend was particularly alarming. We noticed that, rather than his usual O2 drops, his breathing would become shallower, shallower, shallower, then...stop. This is called apnea, and it’s quite alarming. His O2 levels would drop into the 60%s, and he became more difficult to arouse than he usually is. He’d never really recover back to “normal” but instead would keep dropping throughout the night. Hannah would sleep sitting up with him on her chest the rest of the night. The anxiety was crushing, as you might imagine. The fear of him not recovering was overwhelming. That was a Saturday, and Sunday we called the pulmonologist on call to talk about this new development. She said we could bring him in for a sick visit Monday if we thought we could manage another night, or we could go to the ER to be seen then. We opted to stay home, and the same exact thing kept happening.
Exhausted, we took him to see the head of pulmonology who is covering our normal pulmonologist while she’s out on maternity leave. He got Remy set up on an end-tidal CO2 monitor (ETCO2) to get a better picture of how he was breathing. We had recently been for an overnight sleep study (which was NOT an easy thing to do) that did show he had several different kinds of apneas when he sleeps. He has obstructive apneas, which you may be familiar with. Because of his low tone, he struggles to keep his airway open when he falls into a deep sleep and his airway closes, not allowing him to breathe normally. He also has central apnea, which is due to his brain injuries from the CMV. It’s when his brain isn’t sending all the proper signals for him to breathe like we normally would. The pulmonologist, considering his ETCO2 levels, and these various apneas, told us we’d need to be admitted to the ICU overnight to get him set up on a bipap to help correct these issues. The thought was that, with these apneas, he hadn’t been getting the proper rest, and his body would enter such a deep sleep state that he wouldn’t take breaths like he should. Basically, his brain was too tired to breathe.
God was so gracious to us that night. Obviously, we had not been planning on staying in the Nemours ICU when we left for his appointment. Our family and church mobilized to take care of the kids and house while we stayed with little Remy and his new bipap in the ICU. That night, the Lord gave Remy the best night’s sleep of his life! He stayed on the bipap all night, and we were discharged the next day. Most importantly, no O2 drops all night!
The bipap was delivered to our home the minute we arrived home and we were instructed how to use it. Every night since, we’ve fought to get him on it for as long of a stretch as we can. It’s certainly better than before, as even when he wears it for only a few hours, his pulse ox usually remains normal the whole night. But the lights, beeps, and him crying and fighting it off throughout the night still make for some long nights for Hannah in particular.
Nutrition/GI
Remy has been following with the Gastrointestinal (GI) specialists for a while now as well. He regularly sees a speech therapist, which works on nursing and feeding coordination at this age. With his brain injuries, he lacks a lot of normal coordination when it comes to feeding. He had a swallow study done where they inserted a small camera up his nose to visualize the back of his throat when he swallows while feeding. He had a second swallow study done under xray with radiopaque dye to see where and how the fluid he swallows collects as he eats. They determined that he almost aspirates (food entering his airway) when he eats. He’s never fully aspirated, thank God, but they’ve been watching this closely for the past few months to determine a good plan.
A month or so ago, during one of his neurologist appointments, the neurologist recommended getting a G-tube (feeding tube) placed on his belly. She said that many of her patients and their families benefit from this procedure. Remy is not able to progress with feeding like a “normal” child his age would. He does not have the coordination to hold spoons and forks, and would be at an even greater risk of aspirating other kinds of food. The doctor was very compassionate with us as she helped us think through this difficult thing to grasp. She mentioned that the weight on a mother to be the child’s sole source of nutrition really takes it’s toll on breastfeeding moms. It was something that was always in the back of Hannah’s mind, but having this frank but gracious conversation really brought that stress and anxiety out and put it into words. We decided that this would be the right move for Remy, especially since he has such trouble feeding when he gets sick. All of his oral medications and any supplemental feeds can go through the G-tube any time, and will come in handy as we enter into “sick season” here in NJ.
Physical Therapy
Remy has been blessed with a really good PT/OT team at Nemours and through the Early Intervention program. They’ve fought for continuous therapies (normally they take breaks) which he’s had for quite some time now. His neck is getting stronger, he’s starting to reach for toys and moving some on his own, and overall, he’s doing really well considering his type of issues.
Because his arms and legs have “high tone” they “stick” in certain positions. Normally, his arms would be pulled in close to his body, his thumbs curled in to his palms, and his fingers fisted. His legs would be pointing straight down. We give him medications throughout the day to help loosen these muscles and joints. Combining that with therapy will help him not get permanently stuck (contractures) and reduces the need for surgery in the future to…unstick him.
Surgery
We were admitted on Thursday for an NG (nasogastric) tube trial to see how he handles feeds through a pump, and to get his G-tube surgery. See the main image in the article to see what he’s been dealing with for the past few days. We’ve been blessed to have him have handled this tube so well! We thought for sure he’d absolutely hate it, but God has him acting as normal as he can be, which has been a huge relief.
As I write this, Remy is currently under general anesthesia for his first ever surgery. He’s getting his G-tube placed, ear tubes placed, and some other minor things. None of our five other children have needed any sort of surgery, and the weeks leading up to this day have been full of worry and anxiety.
Don’t get me wrong, we’ve been praying for peace. We’ve been trying to place these burdens on Christ’s broad shoulders. But the weight of parenting through this surgery and recovery is heavy. We need your help, church. We covet your prayers. Many who are reading this have gone through so many trials of your own. And to the best of our little Carpe Fide ability, we’ve showered you with prayers and support from out little home in South Jersey. Now it’s our turn to ask for your prayers and support! I’ll try to make the below list as permanent as it can be for the next few weeks:
That Remy would have a successful surgery
That he would come ouf of anesthesia with no issues
That we would be able to take good care of him while he recovers from these procedures
That our other kids will be well parented and cared for during this recovery period
For our family and church support system to be strong, have faith, and be able to mobilize to help when needed
Thank you all for your prayers and support. There’s so much more I’d like to say. Hopefully I’ll find more time to write soon (this has been a few weeks to write even this one article!).