“When you refuse to hide your scars they become a lighthouse for someone else.” ~Jon Acuff
A few days ago we found ourselves remembering just how much uncertainty spina bifida can bring into our lives. Over the past few months we had noticed Chance beginning to gradually show symptoms that were concerning. He was having very brief headaches that would last a very brief time. He began to complain of back pain for very brief periods of time. And at times he would get nauseous. Sometimes spina bifida truly frustrates us because we find ourselves trying to guess and figure out which of the areas could be impacting Chance. We moved up all of his tests, and even had more tests ordered, for earlier this month. We had concerns that it could be any number of things that could cause these syptoms…his shunt, the syrinxes in his spine, tethered cord, a pseudo cyst in his stomach, constipation, or seizures. At the beginning of May Chance went through sedated MRI’s, ultrasounds, an x-ray, and a 24 hour EEG. Most of his tests were inconclusive – his MRI showed a very slight increase in his syrinx in his spine but not enough to warrant us to intervene and his EEG showed added activity on the opposite side of his head and for the first time ever I had to press the “event” button during his 24 hour EEG. We suspected maybe the new activity was his reason for the brief headaches – but that didn’t explain the backaches or sickness.
In his first year of life Chance was always a highly symptomatic child when his shunt wasn’t functioning. Often times he’d show symptoms before tests really would show much evidence of a malfunction – so at the beginning of May we were reassured that we would know if something was wrong with his shunt and that we would watch him closely for more prolonged symptoms and see if the change in his seizures medication helped him. He continued with brief symptoms that made me fear that his shunt might be intermittently failing – Wednesday morning his shunt decided that after 1,325 days of working well to support our son’s life that it would stop functioning. I recall that morning watching Chance closely because he complained of a headache and then slept – and the few times he awoke he was fussy, clingy and restless…when he was awake he was not the energetic little boy we know so well. I took these photos and shared my concerns with his neurosurgeon and prayed once his big brother was home that he’d perk up – a moment later he projectile vomited all over us both and at that moment I knew he was malfunctioning. He was presenting symptoms just like the times he had malfunctioned as a baby.
We arrived at the ER and were taken back to his room quickly – everyone could tell he wasn’t doing well. He wasn’t very coherent most of the time in the room. When Chance malfunctions he is often staring off into a daze and it’s so hard to see him like this. I promised to send his daddy some pictures so he smiled briefly for a photo.
Over the past four years I’ve met so many parents in central Florida and online and the topic of shunt malfunctions do come up at times – I share some of these photos with the hopes it will help you all understand what a shunt malfunction for our son looks like – all kids are different – and many are not symptomatic when they malfunction, however, Chance has always been highly sensitive to pressure changes. If you wish to know what it feels like…think of the worst headache you’ve ever had – and that’s what our little guy was feeling this past week as we waited for his neurosurgeon to arrive.
I share these pictures hoping to help our family, friends and other spina bifida families understand what a shunt malfunction is like for our son so I took photos just like I always do, however, I did nearly have my camera taken from me when I entered the hospital. A security guard questioned my big black bag that I always pack with things that will last me if we stay overnight – and those that know me know that I take my camera with me nearly everywhere I go – especially when my kids are with me. I was told it was “policy” and all I could do was smile and tell the security guard respectfully that I have been in and out of the hospital hundreds of times, even for emergencies, and have never been told I couldn’t have my camera – in fact, I’ve shared our photos openly with the hospital to share our son’s story and have volunteered to help many other families. I was warned that it was policy and that I shouldn’t take pictures in the hospital – all I could do was shake my head and grab my things and escort Chance into the ER. Although I couldn’t photograph every moment we experienced with Chance because things were just so chaotic – I did take photos to share a glimpse of the moments before and after his 13th surgery. Thankfully the ER and OR team weren’t bothered by me photographing my own child going through such trying moments. When he grows older I want him to be able to see just how brave and strong of a kid he has been.
I watched him in pain in the ER for a short time and prayed that maybe it was just a virus or even a UTI – but he clearly was having head pain and wasn’t very coherent majority of the time. I had no doubt his shunt was malfunctioning but I continued to pray I was wrong. Chance underwent a CT scan and x-ray to help us check on his shunt.
As we waited for his neurosurgeon he continued to watch TV and zone out – but there were brief moments that he’d give me smiles.
Shortly after this photo was taken the ER team came in to tell us the pressures in his head increased a bit and that his neurosurgeon would be in shortly and they anticipated he’d be going through surgery. We held him down as nurses attempted IV’s multiple times and so his neurosurgeon could tap his shunt to confirm if it was working. I was praying that maybe she could just change a setting but by tapping his shunt she was able to tell that it was no longer flowing properly. Just as we suspected, his shunt needed to be replaced.
As we arrived in the prep area for the OR Chance continued to zone out. We remained by his side as the nurses and anesthesiologist prepared him for surgery.
Although it’s been over 3 1/2 years since we’ve taken Chance into an emergency surgery – many of the nurses in the OR area remembered him well. We were greeted with the thoughts, “oh Chance we were praying this wasn’t you on our list for surgery.”
He still had moments where he would smile for us – there’s no doubt that he knows he is loved.
Even after 13 surgeries – it never gets easier knowing your child is going through a surgery. Even with all the faith we have in his doctors – it’s hard not to worry and fear the uncertainty of the days and week ahead as we remain hopeful that this shunt will do it’s job for a long time. We greeted him after surgery and he was awake but still very groggy.
He had a tough time keeping his eyes open – we stood back and admired our beautiful brave boy.
And from time to time he’d open his eyes and smile – clearly looking for the reassurance that we were still there beside him.
Once he was stable we took him to his room to recover.
Typically children who undergo a shunt malfunction recover well and go home a day after surgery. His doctor was hopeful to send him home the next day but wanted to watch him closely to see how his recovery went. The next morning he woke up still very tired from surgery.
But he was all smiles – partly because he could order pancakes for breakfast.
Most of the morning after breakfast he was tired and very quiet. One of the doctors came to visit him – he remembered Chance from when he was a baby and his shunt malfunction history. Now that Chance is a bit older it was awesome to see just how much he interacted with Chance to help get him to smile. The fart app sparked a fun humorous time for them both.
We’re so thankful for those who stopped by to check on Chance – though we have family and friends in Orlando it’s always the families affected by spina bifida who step up to show their love for our son. Though Chance had his own toys as well as toys and gifts brought from others – very little made him want to move or play less than a day after surgery.
He’d still smile from time to time but he seemed to not be feeling himself still.
More than once during the day Chance crashed and got some rest. He continued to complain of a headache periodically as well – I grew more nervous if this shunt was working. Perhaps it’s my fear of his first year – more than once we’ve had a shunt fail within a matter of a day or two. So we agreed with his neurosurgeon that we’d keep him another night and if he still complained of pain or wasn’t himself we’d order more tests.
By the evening Chance was happy to have our family visit him – his buddy Jaylen sat and played nintendo with him.
I had hoped he was doing better seeing all of the smiles with our family but then just before bed he fell asleep crying with another headache – a bit of tylenol helped him rest through the night.
He woke up happy that his big brother called to facetime with him, but still he seem to be feeling pain. He began to feel a bit better at times – but it was really tough to know if what we were seeing was recovery pain or his shunt beginning to have issues.
By midday we agreed that we would have Chance undergo another CT Scan. The test would help us see the pressures in his head better so that we would know if something was wrong or if we could be reassured to go home. Chance has always cried so hard through all of his MRI & CT tests – but this week was the first time ever a radiologist took the time to explain what he was going to go through and helped him feel calmer about the test. It was the first time he’s went through this test without crying.
Once we returned to his room one of the doctors returned to ask him if Chance would like to see his tests. I adore that Chance got to be a part of his medical care – he got to see the pictures of his head and brain and got to see that his test showed that his pressures looked improved. We suspect his headaches are from him getting use to the changes in pressure in his head.
He’s now went through 13 surgeries – 10 of which have been on his head. We’ve been keeping a close eye on his incision and keeping it clean and paused to take a picture today. Here’s his newest battle scar along with his huge smile to help reassure you all that he’s doing a lot better since surgery. He still has a few minor headaches but thankfully most of the day he’s doing great.
He’s so happy to be home with his big brother Jaylen.
The two have been total goofballs!
And yes, leave it to Super Chance to be a little rebellious and defy doctors orders. He’s back to bouncing around like we’re use to.
Thank you all for your prayers & support – we’re happy to have Chance home and doing well.
Cheers!
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by Amanda Kern
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