Another surgery day in the books. The relief I feel when they are completely done is something I can’t even describe.
But before I tackle the surgery day let me run through a few random and useless updates just for the fun of it.
We caught a picture of our bear friend this week. He came on salmon night yet again.
Our front door is to the left of those rockers if that gives you some perspective.
Speaking of salmon, our Monday shopping trips just got a bit easier now that I figured out how to rig up Levi’s big boy seat onto Malachi’s wheelchair stroller.
As you can see in the picture above, Levi loves to mess with Malachi’s feet. Well, Levi loves to mess with Malachi period. He never leaves his side at the house, which is so sweet but also so dangerous for Malachi. This week he has been very rough with Malachi, causing him to burst into tears multiple times. I watch them like a hawk but Levi’s violence is so fast!
I want to encourage their brotherly bond, but also let Malachi know that he has a voice and can communicate to me when he is no longer enjoying the interaction.
I am constantly asking Malachi if he is happy or sad about Levi’s rough play and the majority of the time he tells me “happy” with his signs, but every now and then he gives me a firm “sad” sign and I pull Levi away. They really do love each other so much! Levi means well….mostly.
The high school boys soccer team we coach ended their season on Thursday so our schedule frees up tremendously for a bit. The temps have been getting more and more intense making it difficult for me to justify taking the kids out to the games.
Here is Levi with one of our other coaches, Tanner. He is Levi’s best bud and one of the only people Levi will willingly go to.
Okay, now on to the big surgery reports.
Levi and I hit the road around 4:30 on Friday morning (after checking for our bear friend of course) and headed down to Chattanooga to check in. We decided it was best for Jake to stay home with Malachi to cut down on some of the chaos. Levi was the first surgery of the day with an operating room time of 8:00. Since we were pairing two surgeries into one operating room we were top of the list.
Even though we have done this dozens of times, this time around was a little different experience since he is more mobile and more aware. He was his normal, wild self getting into everything within his reach. It was all fun and games until I made him change into his hospital gown.
And then the eye surgeon marked on the operative eye which he did not enjoy.
We jumped through all of the pre-surgery hoops- meeting with anesthesia, both surgeons, operating room nurses, and several others. Then the dreaded hand off moment came. We were able to send some “silly juice” into his tube that helped keep him a bit calmer since he is having separation anxiety issues, and with that on board he happily went with the nurses. For most of Levi’s other surgeries I have carried him back to the operating room so this was a different transition for me to deal with.
Levi had his right eye operated on, peeling back the outer layer and manipulating the muscles to get the eye more centered instead of gravitating inward. We will likely have to do the same thing to his other eye as well, but our hope is that his brain will like what it sees and start to correct automatically without any other interventions.
Here is a photo progression of the last few days.
Surgery Day (right out of recovery):
Later that afternoon:
The evening of surgery day:
And finally, today:
It progressively got worse but now is starting to look a little better. We have to put an ointment in it each night and keep him from touching it, which is an enormous challenge.
The eye surgery went as planned and we will be following up with the surgeon in about two weeks. It can take the brain up to 3 month to adjust to the changes so we won’t be able to call the surgery a success or a failure for several weeks.
Levi also had a bronchoscopy (throat scope with a flexible tube down his nose, hence the runny nose in the pics). In order to tell how the vocal cords are moving he can’t be completely under so they do a lighter sedation during that procedure.
The surgeon came in and gave us the amazing news that Levi’s vocal cords are moving!! This is HUGE! Backstory in case you are new to the blog…
Levi was born with idiopathic (which means unexplained) bilateral (means both) vocal cords paralysis (meaning his vocal cords don’t move). This is an extremely rare diagnosis, some sites stating that it happens to approximately one in a million children. This was the first case of idiopathic BVCP for our Chattanooga ENT. There was a 50% chance the brain would wake them up by the time he turned five.
We have been treating Levi as though his cords will never wake up, so I was absolutely thrilled to hear that he saw movement!
In my head, if the vocal cords woke up life would go back to normal for Levi! But I am learning that it is a little more complicated than that. The cords are moving, but we aren’t confident that they are moving like a typical persons. He is still having a pretty loud stridor (wheeze) when he gets worked up and still requires 1/2 liter of oxygen at night so there is still something complicated going on in that airway of his.
BUT as you can imagine, this is a huge step in the right direction! Based on this information we will now be pursuing a swallow study to see if it is safe for him to drink liquids, with the goal being to get him completely off his g-tube. Once the tube goes unused for 6 months it can be removed permanently.
We will also be setting up an oxygen study to see how low we can go at night to keep him safe.
Tomorrow I will be calling Cincinnati to set up an appointment. They will likely want to see it for themselves, meaning another procedure up north but I am excited to share the news with them. This really is an answer to our prayer.
Alright, raw emotion time.
This week has been very difficult for me. I have to fight hard against my emotions on surgery days, as crying drains me of any tiny inkling of energy I might still have left. I was running on under four hours of sleep and could feel the breakdown coming, each time talking myself out of it.
Have you ever had zero desire to do something? It is like looking down a dark path that you are 100% sure will lead to pain and suffering for your child. No part of you wants to step foot on that path. Everything inside of you is telling you to run away from that path. But again and again…37 stinking times…. I scoop up my unsuspecting, beautiful children and carry them down that dark path towards the pain and suffering. They allow themselves to be carried, still smiling, trusting that mom will protect them from discomfort. But the reality is that as much as I desire to, I simply can’t. I kiss their sweet foreheads one more time and watch them get closer and closer to the pain until it strikes them leaving it’s mark. And after the pain hits all I can do is hold them tight and reassure them I won’t let it happen again, which is a complete lie.
I have to let it happen again, and again, and again. I am plagued with so much guilt for the part I play in their necessary pain.
I shouldn’t have a “surgery shirt”. A dark shirt that hides the post-op blood that my boys inevitably pour on me as I desperately try to comfort them in the recovery room.
I shouldn’t have a hospital backpack- something I splurged on last year. My splurges should be pedicures and purses like other moms my age. And I shouldn’t have to pack that bag for an unexpected hospital stay, something previous surgeries have trained me to plan for.
I shouldn’t have a “night before surgery” routine of clipping my fingernails so I don’t self mutilate my fingers during surgery.
I shouldn’t be able to walk blindfolded to the recovery room. Or know where the bathroom is without asking. Or even know when the best time to take a restroom break is so you don’t miss surgery updates.
I shouldn’t be recognized and called by name by the anesthesiologist.
I shouldn’t be glad that this is just an outpatient surgery. I should be like all the other moms waiting with their children in pre-op…terrified and nauseous, not sure what is about to take place.
I shouldn’t have to avoid the foods I love on surgery days, worried that the emotions of the day will attach themselves to that food putting it on my “never again” list.
I shouldn’t be able to tell you the exact room and chair I sat in for each of my sons life saving surgeries.
I shouldn’t know these things.
These negative thoughts could end here, and I would be totally justified in having them. But there is a light inside me that reminds me not to dwell in the darkness. So I will step back out of the emotional shadows I have allowed myself to gravitate towards and pursue joy, as elusive as it may be sometimes. Yes, crazy, inexplicable, unwarranted joy.
It is in these dark moments that even our emotions can reflect the light of hope that is within us.
As I thought about these emotions this week I couldn’t help but think about Jesus in the Garden of Gethsemane. This story appears in all four of the gospels and I like each account for different reasons. But for tonight I want to share Mark’s account with you from Mark 14.
33 And He took with Him Peter and James and John, and began to be very distressed and troubled.34 And He said to them, “My soul is deeply grieved to the point of death; remain here and keep watch.” 35 And He went a little beyond them, and fell to the ground and began to pray that if it were possible, the hour might pass Him by. 36 And He was saying, “Abba! Father! All things are possible for You; remove this cup from Me; yet not what I will, but what You will.”
I talked about staring down that dark path that you know leads to pain and suffering. Christ faced a dark path that He knew would lead to a morbid and painful undeserved death. My dread and agony was a tiny little fraction of what Christ was dealing with that night, so don’t think I am bold enough to compare my trials to the one that he faced. But there are so many things in this passage that my heart relates and clings to.
“My soul is deeply grieved…” Oh what a perfect description for the turmoil that my heart experiences for my children. It is a deep mourning that takes place, knowing that there is nothing I can do to prevent their suffering in this life.
“All things are possible for you; remove this cup from Me…” As difficult as the last six years have been, it has never shaken our faith and belief in God. I know that God is able to remove my cup at any moment. But like Christ, I also recognize that the cup in my hand has come from God. And there is a reason He has handed me this cup and compelled me to carry it.
Then there is the single word, “remove”. I acknowledge this cup God has given me and as painful as it may be I will continue to carry it boldly, believing that this is what God has called me to do. Do I have the ability to throw the cup in anger, or ignore the purpose that He has placed this cup so delicately in my hands? In a sense, yes. But until God REMOVES this cup, I will continue to bear it even when it causes me such heart-wrenching pain. I choose to continue to believe that the cup, while painful, is serving a much greater purpose that I cannot see. And it is God’s job to remove it, not mine.
“Yet not what I will, but what you will.” Ugh. This is hard to verbalize to God and actually mean it. I want to insist that God heal my boys. I want to bargain, beg, and plead that He transform them miraculously…and I believe that it pleases God to continue to hear me believe in and ask for the impossible. But like Christ did I must acknowledge that God’s will supersedes the picturesque one I have created in my mind. And life Christ, I must remember to continually pray that God’s will is the thing that I truly desire.
This life is a challenging one, and weeks like this one are brutal reminders of that point. The emotions of this week have left me physically weak and emotionally fragile. But it is in this dizzy state that I have to focus my eyes on God instead of looking down at the waves lapping at my ankles.
Please continue to pray for answered prayers for my boys. And pray for rejuvenation this week for my nerves. And if I haven’t said it lately, thank you for continuing to cover our family in prayer.