Miracle

I have sat in a room with my doctor and been told that continuing the life of my child would be detrimental to our family, to his life and to consider the hardships continuing with a pregnancy would bring to my daughter.

 This is a doctor that I know well and respect. And he believed everything that he said to me. There was no malice, he was not trying to harm me or my family. He believed that there was no value in life with spina bifida. That this was compassion and offering truth.

I still respect this doctor. And when he sees my son, and hears our stories and sees the videos, he talks about miracles. But my son is not a miracle. Nothing magical happened that made his life with spina bifida worth living. He is not a medical miracle who beat the odds. But in all honesty, with 60-80% of pregnancy diagnosed with spina bifida being terminated, regardless of gestation, in this day and age, in Ontario, in Canada. He did beat the odds.

We beat the odds. To bring love and laughter into our lives. Many things that are expected with spina bifida have happened.

But what my doctors see is the person, the boy, and not the spina bifida. And calls it a miracle

Yes we have spina bifida in our life, but it does not define us. 

Life with my son is so much more than spina bifida, more than hydrocephalus. Life is more than a string of diagnosis’s or a series of hospitalizations.

Life is the big baby belly laugh at 3 months old. The mischievous grin at 3 years old, and the full-on peal of joyeous laughter at 8. Life is about struggling in school, feeling different and falling down. Life is about getting back up, taking one step at a tie and moving forward.

The last 6 months have held our hardest and scariest and most out of control spina bifida (but really hydrocephalus) moments. All of which are not unexpected by themselves.

A shunt malfunction. It feels like we train for this every day. Only it had been 7 years. But we identified it, sought help, had a plan, knew what to expect. No unexpected, it was alsmost like we were newbies in the hospital.

Then a malfunction, a risk after a surgery Plans, contacts, identify and learn about wound infections, treatments, more infections, EVDs (external draining device… so an external shunt), picc lines and more treatment, surgeries and scars. It looks scary on paper. All of these things! These diagnosis’s, these conversations, waiting rooms, recovery, hospital stays and bravery beads. But you take each step back with another step forward. Looking forwards, even if you need to cry and scream in the shower.

Then it all happens again. Step back, fall back, lose control. You can’t fall apart because you need to help hold him together. Everyone asks how you di it. How strong you are, how brave. But you don’t feel strong, you don’t feel brave. You just feel yourself. A bit shattered, a bit scared and angry and jealous. Jealous of all of those other parents who don’t have to worry all the time, who don’t know what it is like to have a diagnosis

But step by step, plan by plan you move get home. You get your boy back, life back and it seems like a nightmare.

Nick says he doesn’t feel brave or strong. But it isn’t about strength and not being afraid. Life with spina bifida and hydrocephalus is not being pushed down, not giving up and not allowing fear to rule, to stop you. Even after 83 days in hospitalizations, 10 surgeries, 13 scars, 3 EVDs, 2 piccs, 4 shunts, and many, many bravery beads (3+ strings)

After all of this, and as life normalizes again you realize that all you need are smiles and laughter. You treasure every day and you love stronger, appreciate longer and just live your life.

That is our miracle.

Showing off!

We had a neurosurgery appointment yesterday. And I had been worried that Nick wasn't near to taking independent steps again. One of the signs of loss of function and the reason we did the spinal surgery last June.

Nick and I had tried doing the steps over the last month or so. Just like in the video, and so we watched the video together. But I couldn't get him to stop and just take little steps. He would just want to start and keep going.

On Monday we went to visit my work and go to a couple of meetings (March Break fun), and when we were walking back to the car Nick just started walking with his crutches and as I watched he just started to do this...

Over and over and over.
He liked doing it more than with his crutches down!

I know that this isn't the same as having the control to start and stop, but it is an incredible step!

The video I have above is actually 2 clips together. Well, the first video is cut off.
This is the whole first video, Nick thought it was hilarious and kept laughing at the video. Katheryn said it should be posted on Fail Army or Funniest Home Videos

I don't think it is that funny, but he bounced right back up!

We did have our neurosurgery appointment yesterday and got the all clear for another 6 months (earlier as needed of course).
I did mention that at the bottom of Nick's cyst scar is a bump. I think that it was normal (and when we saw orthopedics, he said he thought it was normal as well). But I wanted the all-clear from Dr Rutka. And I got it. He said it wasn't anything to be concerned about.

I also mentioned that Nick's eyes will sometimes twitch. But it didn't affect his vision, that I could tell. But we were having difficulty seeing the ophthalmologist at Holland-Bloorview, and were about 9 months past our recommended appointment time.
So Dr Rutka said he would put in a request for Nick for the Sick Kids ophthalmologist.

And we don't need to be back for 6 months!

Operation Day

Today was surgery day.

Which meant leaving the house around 430 in the morning. Nick has started to get nervous for the last couple of days and has been getting irritable. He had been saying he didn't want to have the surgery. But unfortunately that is not an option.

In the morning he was in good spirits.

We were the f'irst ones to arrive (I take full credit for getting so prepared the night before). I was all packed with my own clothes, 5 days worth, clothes for Nick, food and snacks and entertainment for Nick.

Nick was happy that he had some time to play on the compputer while we were waiting.



He was all ready with his Captain America stuffy. He got an arm band as well so he wouldn't get lost.

And he 'had some smiles for the camera. But he kept a tight grip on Cap.

In fact Nick was so comfortable that he actually fell asleep while we waited. That didn't help to make my case to go into the OR with him. Anesthesia said no, that at 6 years old she didn't allow parents to come in.

Nick was ok with that.

While we watied. Kyle followed Nick's example. (He wasn't very happy I took this picture, but I thought that it was an oppurtunity that I couldn't miss)

I wore my Jedi Master Mom shirt for Nick (and added a Sick Kids Surgery Mom).

I was really good for most of the surgery. It was scheduled for 4 hours, but Dr Rutka said it would take about 3 hours. He went in at 8am, so we expected it to be around noon that he would be out. (Allowing time to get his ready prior to surgery starting).

Dr Rutka did come out and talk to us around noon. He told us that the surgery went well. That the cyst was between T7 and T10 vertebra. He said that he was able to drain it well. He made 2 cuts/incisions down the cyst. He told us the cyst was the size of a walnut/lime and that it was an arachnoid cyst (and it was not a syrinx).
He said that it released a lot of pressure on his spinal cord. And that 'It was the right thing to do'

And then it was waitingh for him to be moved into the recovery room. At 'noon ''he came and talked with us. At 1pm the computer said he had moved to the recovery room. And so we waited... and we waited.... and we waited.
And I was getting more and more nervous. Was he not waking up? Was he bleeding? Was there a problem? Why is it taking so long? We watched a lot of different kids names come up with instructions to "See Volunteer" and it was never Nick.
Just after 2 it finally came up. And we could go and see him.

When we got there he was sleeping. He did open his eyes and croak at us when we got there. He said he didn't have any pain. And then would wake up and say he had pain.
We had talked with anesthesia earlier about trying a PCA pump. So we explained it to him, he was able to press the button and then felt better. After about 30 minutes we went up to our room.

We was are staying on 5C, which is the neurosurgery floor (of course) and where Nick went after he was born. Our nurse is one of the nurses that Nick had when he was born and a nurse I went to Ryerson with. So that was really nice.

Nick has been sleeping most of the day.
He will wake up and say he has a bad headache, and his back 'hurts when he is lying on it. So they keep changing positions. The PCA is working well because it is giving him a continuous very low dose and lets him give himself extra when he needs it (I think about 6 times)

Most of the time when Nick is awake he gives us a thumbs up. And then falls right back to sleep.

But Daddy has been getting him to drink some (he is a horrible drinker at the best of times)

So far he is slowly but surely gettingh better. The headache we are told is normal as his body is adjusting to the change in spinal fluid. His back is covered in a dressing and he is moving his legs in bed when we ask him to.
It has been a very long day.
We will see what tomorrow brings.

Questions Answered and a Plan

We have had more appointments for Nickolas so far this year than we had all last year (and last year our SB clinic was divided into 3 days). Katheryn has been feeling the difference and has asked to come to an appointment with us.

We had warned her that it wouldn't be all fun and games. That there would be lots of boring waiting.

We were going to have a busy day. With neurosurgery, ultrasound, urology, bloodwork and visiting another mommy and son at Sick Kids.

We made this appointment with neurosurgery to review all the questions I had for Nick's upcoming surgery. I haven't been having so much second thoughts about the surgery as much as questions about the surgery. I can see Nick getting tired more easily as he continues to walk so well with his crutches. But I have also seen his legs do some funky things to do this. Instead of just turning his foot in, he is turning his leg in and moving his leg from his hip.

We met with a fellow first who went through an assessment of Nick and asked some questions before Dr Rutka came in. When Dr Rutka came in I went through all of my questions written down in a book on stick-it notes.

First of all he is not going to do a spinal shunt. There will be nothing left inside Nick. I think I heard this the first appointment, but obviously I was wrong.

• This is an example I could find online. Nick's cyst is a lot lower down than in this picture, below his shoulder blades. The cyst is within the spinal cord and is pushing the spinal cord out of place. The mobility difference that we are seeing is because of this.

Dr Rutka explained to us what he will be doing for the surgery.
He is going to fenestrate the cyst. Pretty much this means put some holes in it (in medical talk). This will allow his body to absorb the fluid.

For the surgery he will remove 2 of the spinal processes (the pointy part of the back) to get access to the cyst. But he will put these back, he called it an laminoplasty. And then it will heal.
The bones of the back are meant to protect the spinal cord, and the spinal cord is what he needs to access.

He will have about a 2" scar in the middle of his back, between his original scar and shoulder blades. And he will use absorbable sutures (not staples) so nothing has to come out.

We also talked about tethered cord. He felt that tethered cord surgery was not necessary at this time. He said that tethered cord was a much more invasive surgery and he wanted start with the least invasive option at this time and reassess after 6-12 months.
That made us feel a lot better.

Some of the other questions we got the expected answers. Miss the week of school, no swimming for 6 weeks and hospital stay for 3-4 days. He said home Mon or Tues (which is longer than 3-4 days, so we will have to see), but Nick has never gone home on the earlier days or expected discharge.
It all depends on how he is doing. There are risk of complications as well, including infection and leaking.

Katheryn and Nick spent all the time playing with all of the toys and having a great time.

We also talked with the surgical nurse about what we needed to do before surgery as well. I knew we needed bloodwork done. But when we had surgery other times with urology we also had to have an anesthesia consult and sign off by his pediatrician. She said they really only doing it if there are multiple disciplines involved.
So what this really means is that urology cares about neurosurgery (and wants everything signed off), but neurosurgery doesn't care about urology. Very simplified of course.

We had to hurry to get to his ultrasound appointment, but surprisingly we made it on time.
Nick was very interested in the ultrasound. He asked if he could see what was in his belly button. So after they looked at his kidney's we looked at his belly button. We couldn't really see the MACE, but we could see how bowel moving, and I teased him that I could see his Ninja Turtle cereal moving around in there.

Urology came afterwards. We had hoped to talk with the urology NP to come up with a plan for our hospital stay, but she wasn't there. We met with Dr Lorenzo about the Botox, he agrees that it was the deflux failing in April. But we have restarted the gelnique and he has been pretty dry again.
So at this time we aren't going with anything else surgical with urology. But in the future may be some other ways to tighten the bladder neck (which I have always believed is the problem).

Then it was time for some lunch!
I don't think that we convinced Katheryn that appointments are very boring...

Finally Nick had to get his blood taken. He was the most nervous about this. He has been asking questions, like how much blood with they take, and will it hurt. But he was very, very brave. He sat on my lap and I held him. His whole body tensed up when the needle went in, but after that he was very good. He even took a peak at it! It was only at the very end that he said that it hurt.
I told Nick how brave he was. But he told me he wasn't brave at all, because it still hurt. I gave him a huge hug! He was so brave!

After all of our appointments, it was time to make it home for a family nap!
But we all feel better about the surgery and our plan.

Second Thoughts

When we first decided on surgery I felt like a weight had lifted. We had a plan.

But that lasted, maybe a couple of hours.

Then all these questions started flooding in.

What does surgery mean? What will he be doing? Not specifically, but what does he mean by the shunt, is it permanent or will it be removed? Where does the shunt go? What is the recovery like and what kind of incision is there?

I posted some information on one of my parent groups and that just created more questions!

I had a couple of people respond with their experiences with a spinal cyst; decompression surgery, spinal shunt and/or tethered cord surgery  (and they were the choices given by Dr Rutka).

And none of those things I really wanted.

Decompression and Tethered Cord surgery are things that I have learned about spina bifida through the years.

• The thought of a decompression makes me feel sick. A decompression will treat the chiari malformation by removing a part of the skull. And I don't really think that is the issue. Except that most of the things that discusses a syrinx is paired with chiari malformation.
• Tethered Cord surgery is something that has always been in the back of my mind. The spinal cord is caught in scar tissue from Nick's original surgery to repair his back when he was born. As he grows bigger and taller the cord starts to get stretched and damaged. Surgery will release the spinal cord from the scar tissue. But any surgery creates more scar tissue.
• Spinal shunt is what we said we would go forward with. But what is involved in a spinal shunt? Of course I googled it. But I don't want to make decisions on google. So I emailed our nurse a bunch of questions and she made us an appointment to talk with Dr Rutka again.

After talking with some of the parents I am wondering if we should look at tethered cord surgery as well? I don't want to do anything if we don't need to. But I don't want to not do something that maybe we should do.

It is so hard to be a parent right now!

Wondering if we are making the right decision. But then I think about how this has been a concern we have had since last summer. When Nick needed to have higher braces and we talked to Dr Rutka about that. He ordered the MRI, which we got in February, results in March and here we are in May.

Nick's need for higher braces is still there. The independent steps he took in November is still missing. Even looking at the picture above. He is needing to bring his knees in to balance himself. I can see him moving better and getting stronger with his crutches, but I still feel that he is losing something.

He also has started to feel his feet again. I think part of it is that he doesn't want surgery, but part of it is that he has more feeling than a couple of weeks ago... at times. At other times (like when his feet are cold) he still doesn't feel it. Kyle and I have both been testing them. There are times he feels them, but there are also times he doesn't.

I still have questions and options. But we have another appointment with Dr Rutka at the end of the month. I am planning to be fully prepared with written questions to ask, and Kyle will be there.

We also have a surgery date. June 16th.

I spent all weekend covering my shifts at work. As well as worrying and wondering. Wanting to know information, but trying not to just google everything. And a syrinx is considered to be a rare medical disorder, secondary to something else, so it is difficult to find valuable information.

It has been over a week since we made the decision for surgery and got the date.

I have felt stressed and anxious. Up until Monday all I could think of was the surgery and the choices and what to do. I thought about it, I dreamt about it. But I've been trying to distract myself. Breathing exercises and my new mantra

I have been feeling better about it the last couple of days. One reason is  because I couldn't keep going on like that. And there isn't anything that I can do. I have to trust that we will make the right decision and trust in our neurosurgeon.

And blog. Which usually makes me feel better

Neurosurgery

We had our appointment with Dr Rutka today.

We talked about the loss of feeling in his feet, but also about how well he is doing with his crutches. His shunt is doing well, but he has complained of quick headaches, which is new. They don't actually last very long, a couple of minutes.

But I also see that he is turning his foot in more, and his left foot is slower (but it always is). But he makes up for this with his walker and crutches.

But in the end he said we had a couple of options. Including surgery to drain the cyst, the fluid that is pushing against the spinal cord, and/or surgery to untether the cord. We decided on surgery to drain the cyst. This should start bringing back the feeling.

I forgot to ask (again) if what we are talking about is a syrinx, which is a collection of spinal fluid in a  cyst that collects inside the spinal cord and can injury to cord from the inside out. This is what I am pretty sure he is describing, but he never actually used that term.

We went into a different room to talk with the booking nurse and ask questions.

Nick and Papa found some things for distracting themselves.

I think he is a bad influence

But Nick thinks that he is the funniest!

We are looking at surgery in 1-3 months. He will be in the hospital for 3-4 days. Looking at healing, infection and pain control. It will be on the neurosurgery floor we have been to before, and I can stay with him the whole time.

It was afterwards that I had other questions about what will they do with surgery. Will they do a shunt (which he mentioned in March). Will the shunt be permanent, how will it effect his head shunt? What about a decompression? What about tethered cord?

At the time, when we were meeting with the doctor it seemed like the surgery wasn't really a big deal. Except of course that it is neurosurgery, and of course that a 3-4 day hospital stay (which is a long time nowadays).
I went onto a couple of spina bifida groups on facebook and asked for any experiences and worried myself. Some asked about tethered cord and why not do tethered cord surgery. Why do surgery at all, and that the surgery was often used as a last resort. This is not what I was thinking.

So I emailed the nurse who went through the pre-op information and asked some of the questions.

I am freaking out just a little. A little bit of me is still calm because we have a plan.

Neurosurgery Update

We had our neurosurgery appointment.

This was the review the results from the MRI appointment.

It was an early appointment, which is good, considering we are getting a snow storm

I had thought that everything was ok. Nick has been moving great with his crutches and has really been improving with these. The concern I had in August, which prompted the MRI, was still there, as he continued to need the increased bracing.

But he has gotten stronger. So what I expected was that the MRI would show tethered cord and even though he needed increased bracing, his symptoms didn't really seem to be getting worse.

So that is what I expected. And that part did happen.

But something else unexpected was also on the MRI. Nick has a cyst on his spine. Dr Rutka asked some questions about how his function was, but all I could think of was how well he is doing with his crutches. I couldn't think of any questions at all.

We are going to watch for signs of loss of function and follow up again in 6 months.

He said often treatment is to drain the cyst, but it could redevelop.

Because we are not there yet, we didn't really talk about treatment.

It was actually an extremely quick appointment

We didn't want to get stuck in the snow storm (which had already started by the time we left) so after a quick visit to the Disney Store we were back on our way to Union Station.
Nick may have had a tiring day

After a couple of mishaps, and missing one train because the elevator wasn't working. And having 4 different GO Train employees working to get us up onto track level we were on our way home.

Nick and I decided to treat ourselves to some lunch. After being in the wheelchair for the entire morning Nick wanted to use his crutches. (While my mind is still racing about the cyst)

Nick was very cheerful and enjoying his day off.
And he liked showing off his SB&H shirt. (Because we are all Strong, and we are all Brave and we are all Human)

He wanted to take some pictures of me as well

I haven't posted about this for a while. Kind of the thinking that if I don't write about it, it will go away and not be true. But then I look at Nick and see the boy in front of me.
But lesson learned. No more going to appointments to talk about test results by myself. You think I would have learned that lesson (when I was downtown all by myself when we got the spina bifida diagnosis).

Check-up and fun

We had our annual check up with Dr Rutka our neurosurgeon.

Nick has been more interested in his body and how he was born that I told him that we were going to meet the doctor that did his first surgery on his back, and put the shunt in his head. Nick wanted to see the hospital that he was born at (which is right across the road from Sick Kids)

Going downtown mean another ride on the train, which Nick was very excited about
We were also going to try to take the Subway as well. The TTC is somewhat accessible; some stops are accessible, but not all of them. It is difficult to find where you are going during rush hour, we were just past rush hour so we had some room to move around and try to find where we were going.

There is construction at Union Station, so there was a lot of turning around. But eventually we found out way (Nick wanted to know why we were going around in circles). But we got on the subway and to the right accessible stop (not the hospital one though).

While we waited for our appointment, there was a book talking about transportation (train, bus, subway, car and bike). Nick read the whole book with me!

He also played with some of the small kid toys... I told him he was too big for them
When Dr Rutka came in, he had a bunch of residents with him. All Nick could do was stare at these residents that were crowding at the doorway and looking at him.

Nick couldn't think of any questions he wanted to ask.
In the end, everything is good. His shunt is good. We talked about Nick's need for increased bracing and if we should be concerned about this (tethered cord). So we are going to have another MRI in the next 6 months or so.
When I was filling all the paperwork out, I was asking if we could try to do a non-sedated MRI. So I put that in the paperwork, and will talk to them more when we have the appointment.

Now that all the hopsital stuff out of the way, it was time for some fun!

First stop, street meat. We had a couple of different places around Toronto that we could visit. Nick decided on the Museum

So we walked up to the ROM (farther than I remember, and the accessible subway stop was a lot farther than I thought)
They had a Pompeii exhibit that I wanted to see. Thanks to the Easter Seals Access2 card our admission was discounted (Nick's companion... me... got in for free).

Nick and I had fun trying out toga's (they are much bigger than you think they are).

Nick wasn't sure at first, but finally tried it on

Nick wasn't that interested in all of the artifacts that were there, but we did have a whole conversation about the penis and nipples on some of the naked statues.

They had a huge screen with a blowing up volcano and ash in the background.

They had some of the casts of bodies, I wasn't sure what Nick would think. He was interested in the models of how the casts are made and wanted me to take this picture

After Pompeii we got to visit the dinosaurs

The T-rex

A giant turtle

And Nick wanted to see the pterodactyl

We also saw a new dinosaur they just discovered. A type of triceratops.

We explored a bit more and then headed to the gift shop and did some Christmas shopping (yes you read that right).

Then it was trying to find the accessible subway stop (I was too tired to walk back to Queens Park and the Museum stop is not accessible). After walking the wrong way a couple of times I did find the right stop. Walked into the station and had the guy behind the glass start yelling at me that we were in the wrong place and needed to go around the corner.
I went outside and looked around the corner, but it was just a driveway. I stood outside the station looking very lost and confused, with Nick asking why we were stopped. I'm trying to look at the TTC website and can't find it (I can only find the address I'm standing at). I'm sure I'm looking very lost and confused and a lady asks if she can help.
The subway is not exactly 'around the corner' more like down the street, down another street and then up the street. She was so nice to walk with us until we found our way.

Then it was TTC and Go Train during rush hour to get home.
My feet so much! But Nick got all checked out and had a fun day