So many medical, emotional, and surgical updates for you this week. It was definitely a week of ups and downs! But it is always nice to start with a super cute picture:
We started this busy week off with a very hot Monday. It has officially turned to summer here in Tennessee and boy, do we have some major sunshine. I even got the chance to sit on the back deck alone for a glorious 30 minutes and read a Reader’s Digest I had been saving in the plastic wrapper for when I got some free time. I plopped down and ripped the plastic open and started laughing hysterically as I noted the cover was dated May 2013. I guess it has been that long since I have had “free time”. The articles were outdated but it was a wonderful 30 minutes.
We spent the morning at the soccer field and then headed into town for Malachi’s horse therapy. The time in the heat got to Malachi and when we got him home he was acting a little more lethargic than normal. I took his temperature but it was normal so we just watched him very carefully. Twenty minutes later I took his temp again as he looked a bit worse and it was already at 101 and rising. His brain struggles to regulate his temps so when he overheats he continues to do so very quickly. We stripped him down to his diaper and started trying to bring it down and by bedtime we had him back at a decent temp. We struggle with this every summer, but it was a bit alarming at how quickly this one came on.
Tuesday was a busy day that started with a trip to the neurosurgeon (for Malachi) followed by the neurologist (for Levi). Not too many updates to share on those…Malachi will be having an MRI done in a few weeks to check his shunt to make sure it is working properly. And the doctor wants to do a repeat MRI on Levi when he turns two, so until then we will be followed on a bi-annual basis, assuming no seizure activity starts. He did label him as “Developmentally Delayed” since he isn’t reaching all the expected milestones, but we don’t put a whole lot of stock into labels in our family.
We were crammed in this tiny room with the boys and their gear for an hour an a half as we waited on the doctor. By the time we left we were all a little cranky.
We ran the boys back home where they stayed with Jake while I ran to get an ultrasound done on my leg. The good news is that they could not find a blood clot. The bad news is that I am still experiencing pain in that leg and it is almost identical (in spot and sensation) to my previous blood clot. They felt confident that I did not have one and said the scan would show it if one was there. Any of you medical professionals have any ideas?
Wednesday Malachi got fitted for his new bath chair, which is absolutely perfect for him! It is so much more supportive than his other bath chair which makes it much safer. He spent 25 minutes playing in the shower the day it came in!
And I thought you would be amused by this little monkey playing. He has been using only his feet to play with things lately, and this was no exception:
Then came Cincinnati. Dum Dum Dummmmmmm.
Anytime we go on a trip with either (or both) boys there has to be a whole lot of preparation. We have to pack and prepare for each worst case scenario. I loaded up the car late Wednesday evening with enough medical supplies and clothing for at least 4 days just in case we have to stay in Cincinnati longer than expected. We had a 12:45 appointment in Cincinnati so we woke up bright and early to make it there in time. We were on the road by 6am and pulled into the hospital parking lot at 12:30- a little too close for comfort! But Levi handled the drive very well.
We met with the pulmonologist who would be doing the bronchoscope (lung) portion of his procedure and talked through Levi’s medical history. This is always more difficult than it sounds and many of the doctors we speak to don’t understand why we so adamantly wanted to avoid the trach, and I always feel the need to defend our decision making. But here is the biggest point we bring up when that question is asked…
There is a 50% chance his vocal cords will never wake up and he will have to keep the trach for the rest of his life. We are making decisions based on him being in that category and trying to avoid a lifelong trach for Levi. Yes, trachs can be wonderful lifesaving devices but also bring a complicated and restricted life along with them. Like we have said before, we are simply trying our best to preserve his normal.
Many of the procedures we have tried have to be done before the age of 9 months when his airway becomes less pliable. Yes, this journey has been exceptionally rough on Levi but we still don’t regret trying to give him a shot at a trach free life and exhaust every other avenue possible.
After the appointment with the pulmonologist we had just enough time for a visit with my grandmother, dinner with my dad and younger siblings, then settled in for the evening.
I knew I needed to get a good night’s rest before our hospital stay but I just couldn’t seem to get my mind to shut off for the night. With Malachi’s medical journey I was always somehow able to keep the stress from physically affecting me. But with Levi’s journey I am a complete and total wreck. As I laid there I couldn’t stop thinking about what they were going to find or what they were about to tell me. It is the unpredictability of the situation that seems to be messing with my emotions. When I finally would fall asleep I would wake up 20 minutes later in a panic. Finally morning rolled around at we got up at 5am to get the day over with.
I did realize this week that I seem to be struggling with some PTSD more than I thought. There were so many triggers, many of which I did not see coming. Simple things like the floor tiles…as I wheeled Levi down the main hallway I was looking at the floor which was colorful with fun patterns and for some reason my mind remembered those stupid tiles and my knees buckled. I immediately felt like I was about to vomit and had to sit down. The room was spinning and I started to sweat. I felt ridiculous and petty but just couldn’t seem to get a grip. There were so many of these moments this trip and I felt a little out of control emotionally. My stomach is still a mess from the nerves.
Levi and I prayed, sang, played, read the Bible, and napped while we waited patiently for his turn in the operating room. After 3 hours cooped up in a pre-op room it was finally his turn and off we went. I know I always say this, but there is just something so nauseating about walking your child to an operating room and kissing him goodbye as you hand him off to strangers.
I left his beloved raccoon toy with him so he would have something familiar there when he woke up, then walked alone down the hall towards the waiting room pushing an empty stroller. I felt the tears coming, but once I open that gate it is difficult to shut so I stuffed those emotions deep down inside of me and kept walking.
I checked in at the surgery desk and before I said my name she knew it…I looked at her quizzically and she said “We remember you!” I wasn’t sure whether to take that as compliment haha. But the truth is, I know their names too. I hate that. I hate that we know so many hospital employees. I hate that we know routines. I hate that we know which elevator to take without stopping by the information desk. I hate that we know which bathroom is the cleanest. I hate that we know to eat from the salad bar at 11 when the food is the freshest and the line is the shortest. Sometimes being a frequent flyer isn’t a good thing.
When Levi is in surgery I wait in a large room with several other families. I am a people watcher, which always helps pass the time. Most of the time there is at least one “Team” there for a single patient- they always wear matching shirts and have all kinds of goodies for the child when they come out of surgery. Then you have the “pacers” who are so anxious they can’t sit down. The largest group you find are the people that sit closest to the outlets and fiddle with their phones trying to keep their mind off of things. You have the “sleepers” who look like they are actually sleeping, but we all know there is no way to close your eyes and actually sleep when your child is in surgery. And there are the anxious ones…like me…who can’t sit still and find different things to pass the time, like people watch. I always make sure to clip my fingernails before a surgery or I unknowingly do some damage.
When the surgeon has an update on your child they call your last name over the intercom and you go up to the little desk in the front of the room. From there you are either directed to a phone where the surgeon is waiting to speak to you or they send you into one of the six small rooms that each contain chairs and a whiteboard. You enter in doors from the waiting room side and the surgeon comes in through a door off the operating room hallway.
During Levi’s procedures I get called into these rooms frequently and often as I have to speak with each of the teams involved…anesthesia, pulomonology, ENT. After each meeting you go back out into the main waiting area until they call your name to go back to the recovery room with your kid. It always breaks my heart when parents come out of those little rooms and their faces clearly show they did not get the news they had hoped.
It really is a hard environment to be in. Surrounded by people just like me that hate to see their child having to go through something so painful. The recovery room is just as bad as it is a large area with walled off curtain slots for each patient and their parents. Hearing children wake up from anesthesia will make your stomach churn. Levi does not wake up from anesthesia well and with his stridor we tend to turn lots of heads.
So here is what we learned about Levi’s airway:
Good news: His airway is as wide as it was last time! That is wonderful to hear. The piece of his rib that they used to prop his vocal cords open looks like it has stayed in place and his airway was “wide enough to pull a truck through” as one doctor put it. They put a balloon in there to dilate it but it is already larger than the balloon so the dilation did nothing.
Bad news: his epiglottis and arytenoids were grown back up and needed to be trimmed, a procedure called a supraglottoplasty. If you remember, this was the exact same procedure we did in January. When he had it done the first time I asked them if this was something they would have to do again in the future and they said no. But it looks like the cartilage grew back (shocking all the doctors) and the procedure was repeated. Here is a visual of what they trimmed.
So we have now surgically done all we can to allow Levi to remain trach free. His airway is wide open, and the area around the airway is as unobstructed as we can get it. So have we done enough for him to breathe safely?
The team has come up with a list of three things that have to happen for him to be able to continue to avoid the trach.
- Continue to grow. The fear is that his work of breathing is burning too many calories and will stunt his growth. So far this is not an issue and he is gaining weight like a champ. He is 7 months and 14 pounds (he started at 4 pounds 8 ounces).
- Get sick safely. This one sounds silly but makes sense. The thought is that when Levi gets a cold or another respiratory sickness that the swelling will cut off his air supply. If this happens he will likely end up in the ICU and back on the ventilator. But we won’t know for sure how his airway will react until that first major sickness hits.
- Pass a sleep study. Levi is maintaining his oxygen well during awake times but at night will dip down without the nasal cannula. When we have him on 1/8th of a liter of oxygen he is fine at night. They are afraid that he is not expelling enough of his carbon dioxide when he sleeps which can cause his brain to not develop properly. The only way to check this is to stay the night in the hospital hooked up to some major equipment. We have schedule his sleep study for July 31st and need some major prayers that he will pass it!
The doctor was a little concerned that he would need to spend the night in the ICU as he was one cranky boy, but with the amount of trimming they did it makes sense that he would be in pain. We Face Timed with dad and brother, hoping that would distract him from crying which worked for a bit.
We were taken to the complex airway floor where Levi screamed off and on throughout the afternoon and evening and finally settled out around 2am. I have been on high alert from the stupid bear (who hasn’t been back since we prepped the shot gun) so every time I heard a noise I woke up ready to run for the gun. We were right in front of the noisy nurse’s station so that happened more times than I would like to admit.
We got a few hours of rough sleep in and woke up at 6:30 and spoke with the doctors about discharge. By 7:30 we were on the road! I stopped for a quick breakfast with Jake’s parents (aka caffeine for a very tired momma) then raced back to Tennessee.
Levi has been in pain but is slowly getting better. His stridor is louder but we were told to expect that since the area would be very swollen.
He did enjoy a nice post-hospital stay bath this afternoon.
While Levi and I were in Ohio, Jake and Malachi enjoyed some big adventures- something I think Malachi really needed. They went to the bowling alley one day and the playground another. The one on one time was good for him. I snapped this picture last week and noticed it had some of that jealousy I have been telling you about.
There is a wonderful thing happening locally here starting in October! A special needs mom in the community has started an organization that hosts programs and events for children with disabilities. They will be kicking off with an indoor soccer league in the fall and Malachi will be participating! Oh how he will love the fun that league will bring, and it will be something that is “just his” which he needs right now. And the added bonus is that they will be using the gym facilities at out church so it will be five minutes down the road!
As far as devotional thoughts go, I have been mentally munching on some biggies. But I still haven’t sorted them out quite yet. God laid 1 Kings 7 on my heart the morning of surgery and I listened to it on my drive. There are so many confusing things about that chapter so I will continue to process and pray about it before I share that with you!
But he also reminded me of the story of Peter walking on water. It is a common story, and one that is pretty easy to decipher, but I think I needed to be reminded of it this week.
“Come,” he said. Then Peter got down out of the boat, walked on the water and came toward Jesus. But when he saw the wind, he was afraid and, beginning to sink, cried out, “Lord, save me!” Immediately Jesus reached out his hand and caught him. “You of little faith,” he said, “why did you doubt?”
Have you ever almost drowned? I remember jumping into my grandparent’s pool as a child and looking up from the bottom of the pool. I remember seeing the ladder but realizing that it didn’t go much further than two feet from the surface of the water and panic swept over me. Thankfully I was pulled out of the water quickly that day and didn’t drown.
But that feeling can be crippling. You freeze and panic, not sure what to do to get out of the situation safely. This week in Cincinnati I truly felt like I was drowning. I felt physical pressure all over my body as I entered that building again. My body was telling me not to keep walking, but I don’t have the luxury of being able to tell it no as my son has to be there. I had to focus on taking big, deep breaths and fight dizziness that threatened to take me to the ground.
When I picture Peter in this story, I see him stepping out of that boat with a look of confidence and determination on his face. Jesus had told him to step out of the boat, and he obeyed. But a few confident and sure steps into that journey he thought about the reality of the situation and panicked. He saw the that the odds were stacked against him as the wind pushed against his body. And he started to sink.
Can you relate with that like I can? Stepping so confidently into something….so sure that God directed you to do so. Then questioning it like crazy?
Like Peter, sometimes God challenges us to attempt the impossible. Sometimes we are asked to walk on water. And if that task alone wasn’t daunting, we are often met with outside forces like the wind and the waves that threaten to take us down.
But one thing I have to remember is that Jesus said “Come”.
I needed to be reminded this week that my strength in those moments needs to come from focusing on the face of God- the one who has called me into this challenging life. And even though the water moves and the wind blows, I can be assured that every step will be firm if I focus on Him. We must obey his firm yet loving command to get out of our comfort zone and walk in faith.
Because it is in those moments of fear that our faith is strengthened.
And even when we fail, as I am sure I did this week in Cincinnati, there is so much comfort in knowing that like Peter, Jesus will immediately catch me and keep me from drowning…as long as I stay close to Him. God’s grace is such a powerful thing.
Will you all join me starting this week in praying specifically over Levi’s airway when he sleeps? Pray that his levels of carbon dioxide and apnea stay in a safe range and that we will be able to avoid the trach at least for a few more years until we see if his vocal cords will wake up? Or better yet, let’s pray that his vocal cords wake up TODAY and all the medical professionals see God’s power! “Ephphatha” BE OPENED! Let’s declare this together over his airway.
Thank you for caring for our family. Our support system humbles us so much and is felt on weeks like this one.