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.

Urodynamics

We have been trying to get some answers regarding Nick's bladder and leaking. We are getting some additional tests about Nick's bladder after clinic in July. So today we headed out to Sick Kids.

We are collecting information about the bladder so that we can make some decisions for next steps.
We had 2 tests. VCUG where they took some x-rays of the bladder when it was full of contrast and as it emptied. It takes about 15-20 minutes. It gave us an understanding of Nick's bladder capacity.

Then it was Urodynamics. This test is a little more involved, it measures filling the bladder with fluid and measuring what the bladder does. It goes very slow, becuase it is looking as bladder movement and spasms it is important to stay still for most of the time, but then also they asked Nick to cough to see if there would be any leaking.

Nick never wanted to cough when it was time. This was something we should have practiced ahead of time, but I never thought about it. They looked to see what the bladder would do when it was completely full. Nick doesn't usually feel when he bladder is completely full, but after his bladder infection a couple of weeks ago I think he recognizes what he feels.

When the bladder was  full Nick got very uncomfortable and started crying. The good news is that even though it was full, it didn't leak. Now that was with Nick lying down and coughing, not as he is running around and being a kid.

After the tests we got to wait to see the doctors.
Nick and I found some things to distract ourselves with. Like an Avengers Uno game.

And some homework

In the end we didn't really leave with a plan. I had wanted to talk about how to get the bladder leaking to stop. But the tests showed a bladder capacity that was normal and no real leaking when it reached the capacity. So it didn't really help us get some answers.

What we left, it was with a plan to cath every 3 hours instead of every 4 and to measure output for a couple of days and have this information with us at our next visit in January. I'm not really happy with this, but at the same time it isn't any type of surgery. So I guess I am happy.

We talked about what our options are as well. There is botox, injected into the bladder to prevent spasms, but from the tests that doesn't seem to be the answer, because the bladder didn't spasm. The other is a bulking agent, which it put into the mouth of the bladder and bulks that part up so that there isn't leaking.
When we talked in July they mentioned that it is considered to be a surgical procedure (operating room, general anesthetic). Not because it is an operation but because it is an invasive procedure on a 6 year old boy. Which is acceptable.

So our plan right now is to cath every 3 hours and as we get closer to January start measuring and have some actual data to bring to our appointment. And then go from there.

Usually when we go downtown to Sick Kids we go to one of the fun attractions. But this was a really busy week (big stuff doing on tomorrow), so instead we just visited the Disney store.

Captain America was very happy with that plan!

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

Dentist

Nick finally had his Dentist consultation at Sick Kids. After our appointment in July, I waited until Nick was all recovered from the MACE before making another appointment to try again. The next appointment we could get was October 1st. 

A week or so before the appointment the dentist clinic called me and said that because of what happened before, they wanted him to be seen at Sick Kids. They had put in the referral in July, hadn't I heard? A couple of weeks of back and forth and eventually a letter came in the mail. We had our initial consultation. November 13, Nick's birthday.

So after a morning in school, Nick and I headed downtown to see the dentist. The destination wasn't the most birthday-friendly, but the trip was. Nick really likes riding the train

The dentist appointment was pretty basic. Nick was fantastic, not afraid, very calm and cooperating through the entire thing. We talked about our experiences with the dentist, our last 3 appointments to fix teeth with nitrous and sedation. We also talked about how Nick did not tolerate the visit the last time.  

Nick let them look in his mouth and we looked at his old x-rays. They printed the pictures, which Nick thought was great!

The dentist resident thought that we could fix the last 2 teeth with the least amount of intervention. A deep cavity maybe needing a root canal on the back molar tooth, and another one at the front. The dentist came and agreed, but wanted some recent x-rays to make sure we knew exactly what was going on in his mouth.

Nick decided to play a bit while we were waiting.
Pretending to spit in the bowl (he thought a spit-bowl was the funniest thing)

And he wanted to know what all of these things were, and what they were used for, and could he play with them. They found out that it was Nick's birthday, and gave him a lego box and some birthday stickers.

When it was time to get the x-rays done, that is when things started going downhill. He was good with the lead cover. But they couldn't get the x-ray tabs in. He just kept gagging and gagging (which is the chiari symptom). He did this before, but I was hoping it would get better as he gets older (we got the x-rays before with nitrous oxide, which decreases the gag reflex).

Even with the gagging, he was still good, and he let them try. With the gagging and the tears rolling down his face, he still let them try.
But we couldn't get the x-rays. So that changed our plan.

General Anesthesia. We have a 'surgery' date of February 2nd, first thing in the morning (the benefit of latex precautions). They have a 2 hour OR time booked, for x-rays, fill/fix whatever is needed for the teeth and a cleaning. He will then wake up from anesthesia and we can all go home.

I have had a number of people ask if we should be going to this extent for some baby teeth? Well the big one that needs to be repaired is on his big molar in the back. They think that this one is deep, and he will have these teeth for another 6 years or so.

We have tried just local freezing, nitrous and sedation and anesthesia is the final step. I knew it was on the table in May, and we tried all that we could to prevent it. Unfortunately we couldn't prevent it.

Once we get Nick's teeth all fixed up, we want to do our best to prevent him from needing it again. I also got a stern lecture about brushing Nick's teeth twice a day, including getting in the back. Even with the gagging that happens when I try to get to the back of his mouth.

I am really hoping that the oral ditropan is what caused the mouthful of cavities. I don't want every visit to the dentist end up in the operating room!

Surgery Day

Today was the day we had been waiting for.
The day started at 4am and we were on the road at 5am to be at the hospital for 6 (and surgery at 8).
Considering that neither kid were go to sleep last night Nick was wide awake before the sun was even up.

We were as prepared as we could possibly be. And you could tell. Everything happened like we had discussed and thought it would.
Registration and arm band, waiting room with toys, seeing the nurse and having blood pressure and heart listened to. Of course Nick had his one cough of the day during this time. But all was good.

There wasn't a lot of time before we were ready to head into another room and talk with all of our doctors and nurses. Nick loved the space to be able to run around in his walker. (this picture is blurry because he wouldn't stay still)

You can tell that Nick wasn't worried or scared, he acted like he was a pro. The surgeon (Dr Lorenzo) came and talked to us. This was the first time Kyle had met him. He talked about what he would be doing, as well as what might happen if the appendix wasn't usable. It was a little bit worrisome that we went in for something that they couldn't guarantee they could do until they were already in.

We talked to anesthesia who said that I could go in with him, and that Nick wanted bubble gum smell in his face mask.
A Child Life Specialist also came by with some blocks and a doll that nick could colour (he did it orange and green like Michaelangelo).

When it was time to go in, Nick went in a wheelchair. He was talking and laughing and just really ready to go. He was helped on the table, we got to see all of the cool big lights, and the stickers and wires that we had coloured in his book.
Then it was time for the mask, he fell asleep holding his Tyrone.

Then it was back to the waiting room. They said about 2 1/2 to 3 hours.
My friend Lisa came to be with us. I wasn't sure that we would need her, but it was such a great thing. The three of us all sat and talked and distracted each other. If it had just been Kyle and me, Kyle would have probably slept and I would have read my book... and thought and worried... and time would have passed very slow.

After 3 hours Dr Lorenzo came to talk to us in the waiting room. Everything had gone well, just like it was supposed to. He was able to do it laproscopically. About 30 minutes after that they called us into the recovery room. Nick was awake, but had been having some pain, they just gave him morphine before we got there. Nick also got Tylenol and Ketoralac (like an IV advil drug) in the operating room as well.

Nick wanted Kyle to stay, so I went up to our room and unloaded all of our bags.
I packed for a coupel of days stay, they said it might just be an overnight stay. But we'll see how everything is.

When Nick came into his room he has been really tired.

I had his Austin toy all ready for him.
And a new blanket with ninja turtles on it.

He wasn't that sure about the IV and kept asking why he had it. It doesn't hurt him, it just isn't usual for him to have a tube in his hand.

I took a picture of how his belly looks like now. I really wanted to know about drains and incisions and what to expect, so I've been taking pictures of some of the things to expect, for those who come afterwards.
The 2 bandaids are from the laproscope, and the tape with the gauze is over the belly button with the blue catheter in it.

Nick has been sleeping most of the afternoon, when he is awake he says that his belly hasn't been hurting.
And about 3 hours after being in his room Nick was awake and alert enough to give us a thumbs up. And he has wanted to watch his Teenage Mutant Ninja Turtle shows.

Most of the time he's been sleeping, but Kyle and I are enjoying the new Nickolodeon Ninja Turtles. While Nick is drifting in and out.

The plan for today and tonight is to keep him comfortable, and once he is more alert to get him up and moving. Also eating and drinking. The IV will stay in, with IV antibiotics until tonight. His temperature has gone up a little bit (not unexpected), so we are keeping a watch on that.

I'm staying overnight with Nick, and Kyle will be heading home to be with Katheryn.
Katheryn has been good, having fun with grandma (Thanks gramdma).

I'll update more as we go, but this is our immediate post-op period.

Thanks to everyone who has been so supportive and thinking and pryaing for us. Thanks to Terri at work who loaned me her keyboard so I could actually blog, and Lisa for knowing that I needed someone to come and be with us (even though I didn't know it myself).And Melissa, Saraha-Lynn and Kitty who called to see how things were.
Thanks to everyone!
We are receiving all of the good-healing vibes!

Getting ready for surgery

We are 16 days away.
I'm trying to get us super-prepared, to just do something

Sick Kids has some great information and resources for preparing your child for surgery.
Now that school is done I have been talking a lot with Nick about the surgery.
He has been very interested in learning about his operation, so I've been feeding this interest

Sick Kids has a video that they recommend watching



The only thing was that at the end the little boy goes home after his surgery. So I had to jump right in and tell Nick that he will be staying for a couple of days.
Nick really liked the video and we've been comparing what will happen to him with the boy in the video.

I was also able to get a colouring book from work (Thanks Alex!) about getting ready for your operation. It is not specific to one hospital or another so it works out well. Nick has been colouring a page a night and we've been reading about what to expect. I wanted a book to use to talk about the surgery, but also something for him to do.

There are a ton of resources on the Sick Kids page
http://www.sickkids.ca/VisitingSickKids/Coming-for-surgery/Pre-operative-appointment/index.html

It has a resource about talking to your child about the surgery, by age group. I have been trying to follow all of the advice

I have been telling Nick what to expect, as much as I know. I don't want to scare Nick, but I also want him to know what is going to be happening.

We've talked about going to the hospital and the waiting room. Nick has picked a toy that will go with him (Tyrone), and I have said that I will be with him and waiting for him in the waiting room.

I'm not sure if I will be able to go into the operating room with him until he falls asleep, or be in the recovery room when before he wakes up. But I've told him that I will be with him, in the hospital with him the entire time he is there.
We have talked a lot about the lying down on the table with all of the doctors with him. He doesn't seem to be scared and will talk about the sleepy doctor.

With the recent MRI, Nick hasn't been that worried about the sleep medicine, we have an old mask for him to play with and prepare.

Nick did this maze to visit all of the places in the hospital, and we got to talk a bit more about that I will be staying overnight with Nick in the hospital so I am always there. He was worried he would be alone.

One of the things that I am worried about is pain afterwards.
We've been practicing some breathing and distraction, but really I don't know how he will be until we are there.
Sick Kids had some resources about helping your child with pain, so I got some bubbles and games and I've printed off some of the pain faces so that we can work on labeling his pain (Katheryn is really good using big and small).

These are some other colouring book resources.

http://www.hopkinsmedicine.org/johns-hopkins-childrens-center/patients-and-families/your-visit/abcs-surgery/surgery-coloring-book.html
http://www.childrensmn.org/web/forparents/042161.pdf

I'm waiting for some last phone calls, all of our papers say if we haven't heard by 1 week before surgery to call a number, so I'm just waiting for that call. One is for the actual time of surgery (I'm hoping for 8am so we are less likely to be bumped) and the other call we are waiting for is the anesthesia phone consult.
We had our pediatrician fill in all of our papers and fax it in. We also had bloodwork done.
Nick was super fantastic with the bloodwork. I got a new hand-sized Michaelangelo stuffed keychain with sounds effects that I gave him right before the bloodwork (literally as we are sitting in the chair).
Nick didn't really like what was happening, and kept watching and saying 'no, no, no' and then 'ow, ow take the needle out' but no crying and he didn't pull away or freak out. He was worried about all the blood leaking out though.
He was so brave!