Monday, July 21, 2014

7 Days

OMG. What are we doing?
Can I bring this giggling, laughing boy who loves swimming and belly raspberries and give him to a surgeon to put a hole in that belly?! To give him pain and tubes and hospital stays, more doctor appointments, recovery time...
What are we doing?

7 days away.


I haven't told Nick there won't be any more swimming, playing in the lake, going to the cottage for the rest of the summer. No more Cedar Park or swimming lessons. That part of the summer ends July 27th.

Nick's belly. It won't be the same. It will have more scars, more marks. More announcements to anyone who sees his belly that something happened. Something was wrong that was fixed.
What are we going to do.

This is all I am thinking about. Planning, counting down. My whole life feels that it is focused on Nick and his surgery. I think about it, dream about it, talk about it and prepare for it.
7 days.

OK. Now that I have that out of my system.

Long term. That is what we are doing. Planning for his future, independence and quality of life. This is the perfect time to do this. We have worked our way to this point, and didn't make the decision for surgery lightly.

Nick isn't worried. Excitement might be too strong of a word, but he isn't scared or nervous or anxious. He will tell you all about what he is expecting.
We are going to the hospital, to a playroom, then the operating room with bright lights. There will be doctors and nurses and a doctor with a mask blowing air. Mommy will be with me, and Tyrone, and Daddy is coming too. I'll go asleep and when I wake up I'll ask for Mommy and she will come. Jennifer and big Taylor and Zivah will come to visit me, and we will stay over night and then go home. Mommy will stay with me until I feel better.

That is the plan. Even though I know more often than not things don't go according to a nice and neat plan like this. I have talked to him about how he will feel yucky after and his tummy will hurt. But he hasn't asked much more, and I haven't offered. I don't want him to be anxious about pain, that is for me to be anxious about.

I know this is for the best. I know it is the right time, the right place, the right doctor. It doesn't keep me form worrying. From forcing myself not to think of all of the what-ifs.
It is surgery.

Do other parents have these same worries with other surgeries, like tonsils? I had my tonsils out at about this age and I remember anything. I'm sure there was scariness and pain, but I still came out of it ok.
I didn't have these same concerns with the shunt insertion or revision. Or maybe I did, but I definitely didn't have the lead up to it. It was definitely faster, urgent-emergent surgery. Ultimately life-saving.
I had all kinds of worries with the original MMC repair, more of what will our/his life look like after the surgery, than the actual surgery itself. I have heard that things don't always go as planned, that there are bumps in the road. But it's hard to anticipate something that may not happen. And maybe it is more that the other surgeries were life saving and not really a choice. Whereas this is. It is our choice to do this.
But rationalizing my fears and worries won't make them go away.
8 more days and the wait is over and we are on the road to recovery.

And what if half the summer is cut short. Nick has a lifetime of summers and cottages and laughter and giggles.
It will all be here for him next year, and in the meantime we will have a grand adventure, recovering, discovering and learning something new. He will have more independence and once everything is healed it will all be good.
Once it is all healed. Then I will be the one providing encouragement and support to all of those anxious parents who aren't sure if they are doing the right thing. And I will be able to say that it is the best decision that we make, even with x-y-z that we didn't expect...

So with 7 days to go, I am quietly terrified, feel we are as prepared as we can be, and waiting for that 8th day when we can be recovering.

OK I think I'm better now.

Sunday, July 20, 2014


whisper, whisper, whisper

I can hear you. Did you know that?

Spina bifida.... vitamins....

Did you look at me? Judge me? Blame me?
Did Nick hear? No, he didn't hear this time. But what about when he does. Will he look at me and blame me for being born with spina bifida?

I've written about folic acid before and folic acid awareness. Yes it is a vitamin, B9, it is in all kinds of foods and women's vitamins and in prenatal vitamins. Yes is has been shown to help to prevent neurotube defects (1 in 1300). Unlike what some Internet searches say (and we all know that the Internet doesn't lie) neurotube defects, like spina bifida, are not 100% preventable.

whisper, whisper, whisper

I am not to blame. Nick is not to blame.
Sometimes things just happen. Believe me, I know how hard it is to recognize that some things you have no control over, no rhyme or reason. I know how it feels better to be able to identify and point and say "ah, that is how it happened".

I have given up looking for answers, and concentrate on our lives.
But sometimes I still hear the whispers.

It reminds me of the a show I was watching about a boy who was born with no foot, or a damaged foot. In the interview where he talked about what happened he described it as "my mothers umbilical cord wrapped itself around my foot and cut off the circulation".
What if Nick sits in a similar interview and says "my mother didn't have enough folic acid and so I was born with spina bifida" I think it would break my heart.

I'm not sure what to do about the whispers. Learn to live with them I guess.
I'm sure I'm just extra sensitive leading up to Nick's surgery.

Thursday, July 17, 2014

The Dentist

Nick has been going to the dentist to get 9 cavities filled.
9 cavities!

I have since found out that the Ditropan was probably to blame for the cavities. The sugary oral liquid given three times a day for years, on top of the fact that the same medical gives a dry mouth that can impact cavities as well... And the sensitive gag reflex that prevents us from getting at the back without a fight.
I wish I had know this before and been more prepared for the cavity consequences.

We were referred to a specialized Kids Dentistry clinic and came up with a plan.
We had a couple of different choices to get them fixed.

1. Using General Anesthesia, they offered in the clinic (not even considered) or the hospital. It means that they can fix all the teeth at the same time, but it also means general anesthesia
2. Using freezing, nitrous and/or an oral medication to make him sleepy. It means that he will be awake (but sleepy), but they can't do it all in one sitting.

We decided on option #2, all of three of the choices. We talked about all of the different things they do to help to calm Nick if he gets upset and make it a non-negative experience.

The first appointment didn't go entirely as planned. Nick was scared, I hadn't been 100% sure of what to expect. We stopped when he started to get upset and crying when they had done 3 teeth on the bottom.
He didn't like the feel of the rubber (latex free) dam they put in his mouth. I know from experience it feels suffocating, especially for a kid. And the pressure is uncomfortable.

I had looked at Sick Kids referral to see if we should go there. But after talking with Nick I thought that we still might have a chance to avoid general anesthesia. So I didn't follow through with getting a referral.

For the next appointment we practiced calming. And breathing through our noses (and inhaling the nitrous oxide) when Nick got scared. We were much more prepared. 

So the next time we went, we did top and bottom on the opposite side and Nick did great. I was so happy.
We only had one appointment left, with 2 teeth and then we were done with the dentist for a while.
That was the plan.

It didn't go as planned.
Nick got very stubborn and wouldn't let them doing anything.
He refused to let them take his blood pressure, or drink his sleepy medicine. I ended up syringing it into his mouth, and after an hour he was sleepy.

Then he got upset about everything. The freezing made him cry. Even with more freezing. He got upset with everything they tried to put in his mouth. Crying big tears that rolled down his face and into his ears. He would fall asleep when they stopped. But start up again if we tried again.
We tried everything to calm him down. But he just kept crying and saying no.
We tried about 4 times before giving up and leaving without doing anything. (Except drug him up). The dentist was great and very patient with him.

I'm not sure what we are going to do next. The 2 teeth we left for last are the ones that need to most work (potential root canal for a front tooth and cap for a back tooth). I know it is just baby teeth, and they will fall out anyways. They still lay the ground work for adult teeth.
But if we start talking about pulling or that they are just baby teeth, I imagine what Nick's smile would look like for 3 years without a front tooth and I want to cry.

It would have been nice to be able to have identified the need for general anesthesia (which he is getting for his surgery anyways) and be able to do everything at the same time. But it is too late for that now.

I am really hoping that with all of the concentration we have put on his surgery that I might have sprung this dentist visit on him and that is what caused him to be so upset and scared.
I'm hoping his teeth will be ok while we wait to figure out what to do.

Tuesday, July 15, 2014

Conductive Education Camp

Nick has been going to conductive education camp for the last week and a half.
He races up this ramp and has been very excited to go!

We made goals for the camp. I said that I wanted Nick to work on standing and balance and try out the forearm crutches, and continue to use his canes. The camp has group activities and some of the same activities focusing on letting the kids learn about their bodies and have fun and always challenging them.
For mobility Nick came in with his walker, and then the walker went into the hall and when he moved around, it was with his canes. When it was time to go home, the walker came back  out.
I was hoping that they would get Nick interested in the crutches. I had talked with some of the conductors and they had mentioned that the crutches forces the body to lean forward, and they want more of a straight back, which is why they focus on canes. Which makes sense to me.
They did try, but Nick still didn't really like his crutches. Taking off the arm part seemed to help, but he still wasn't that impressed (and told me so).
They also worked on challenging Nick with his canes. Starting with his larger based quad canes, then the smaller base HUGO canes, and also modifying the crutches for a single 'cane', which he actually walked with.
I didn't realize how big the quad cane base was. And of course the HUGO canes give him less support which he is totally ready for.
The just kept challenging him to help him to realize what he is able to do

Every day has a different theme and learning and singing and doing. It's learning and creating. Learning big stuff and small

Being silly while still learning. And Nick loves silliness!

Working on standing went amazing! He was doing 20-30 seconds of unassisted standing (and loving it) by the end of camp. We have one of these horses at home we pulled out to play with as well.

There is lots of opportunity for standing

Like when you are building an igloo.

 We talked all about igloos and the arctic on the drive home. The cold and the sleighs, what animals are there, where you live and how you dress

One of the great things about conductive education is that it isn't about what one child is doing independent from everyone else. It is also about doing things together in a group, learning and working together.

Friday was Nick's last day and they had a lemonade stand. The kids helped to make all of the signs, and made the lemonade and then sold it at the side of the road.

Nick got to be cashier part of the time (I love this picture, he looks so serious). They made $139

All of the hard work tired him out!

I am so happy he had the opportunity to participate in camp this year and hoping to do something in the winter semester.

Saturday, July 12, 2014

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

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.

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!