Getting Ready... 1 week away

We are one week away from Nick's surgery.
I have been trying different things to get Nick ready. But first I wanted to look over my own resources. I had a collection of booklets and the Sick Kids video when we were getting ready for surgery 2 years ago.

I also reviewed my blogging from his MACE surgery to see if I had any tips or tricks

• surgery day - http://riddingfamily.blogspot.ca/2014/07/surgery-day.html
• night and bleeding/pain - http://riddingfamily.blogspot.ca/2014/07/a-rough-evening.html
• recovery/day 1 - http://riddingfamily.blogspot.ca/2014/07/a-new-day.html
• visitors - http://riddingfamily.blogspot.ca/2014/07/visitors.html
• discharge - http://riddingfamily.blogspot.ca/2014/07/we-are-outta-here.html

It helped me to remember what had worked and what hadn't.

I had printed out another workbook, but Nick wasn't interested in it.

He told me "Mommy, I just had surgery (botox). I know what to do" 

So we talked a lot about what to expect. And I had some props

He didn't want to have his blood pressure taken. But was very interested in the stethoscope.

We watched the Sick Kids video again

We have talked a lot about how I will be with him the entire time (except  during the operation when he will be asleep).

I have been making lists about what to pack. Including clothes for myself for 5 days, some food (so I'm not eating all cafeteria food) and entertainment for Nick.
I don't really know how to prepare Nick for afterwards, because I am not even sure.

Katheryn has been there when Nick and I have talked about what to expect. She had some questions as well. We are trying to keep her routine as normal as possible, so she will come to visit on the weekend and will stay in school. She wanted to come and stay at the hospital.

It has been a long journey to being 1 week away. Starting in being taken by surprise March 1st and almost on the road to recovery.

Awake MRI

Yearly MRI's are not anything new to us. We usually travel down to Sick Kids every 2 years for a sedated MRI.
I think that Nick has had 4 or 5 MRIs (not including the one in utero). He had one just after he was born, I remember them wheeling him down in his bed. I think he had another one in 2010, but I can't actually find the post for that one, so maybe not? Nick had regular MRIs done in 2011, 2012 and 2014. These are all to look at his brain and spine. And we have been (knock on wood) so far, so good.
All of these MRIs involved sedation.
Because Nick was young, and it is important to stay perfectly still while they take pictures, it is standard to use sedation and have the child go to sleep with general anaesthetic. This makes the MRIs more involved (and riskier, with the risk of general anaesthetic). It also involves some sort of recovery, because general anaesthetic throws your body off.

When we had our last neurosurgery consult and Dr Rutka ordered an MRI, I asked about having an unsedated MRI. I was told they usually start doing this at 6 years old. Nick is 6, so I wanted to try. I think that he will be able to stay still long enough.
If he is not able to stay still, we will have to reschedule the MRI on another day.But I thought it was worth a try to be able to skip the general anaesthesia.

I have had an MRI myself (when I was pregnant with Nick) and so I know what it is like. I remember needing to stay perfectly still. It was loud and there was a speaker for the tech to talk to me. I kept my eyes closed the entire time because I knew that the machine was a couple of inches away from my face. And to keep myself calm and to distract myself I sang (in my head) the entire Act 1 of Phantom of the Opera. The MRI took about an hour, and so did Act 1.

Keeping my own experiences in mind. I wanted to find a way to prepare Nick for the MRI. When they called us with the appointment day and time, 545pm on Feb 4th, I asked about preparation but they didn't really have any suggestions other than to search for youtube videos. (Which I was surprised about, that Sick Kids didn't have their own video like other hospitals).
I am most worried about how Nick will react to the noises. As loud noises bother him anyways.
This video has some examples of some of the noises.

Nick knows another boy, a couple of years older than him, who had an MRI done recently. So he was talking with Nick about what to expect.

I have also been looking online for some resources.
This link: http://www.texaschildrensblog.org/2013/04/preparing-your-child-for-an-mri/ has a child life specialist who talks about the MRI, it is similar to the above video, but I don't find the noise to be as clear.
Some other resources that I found are:
Specific for Brain: http://kidshealth.org/parent/system/medical/mri_brain.html?tracking=P_RelatedArticle
Specific for Spine: http://kidshealth.org/parent/system/medical/mri_lumbar.html?tracking=P_RelatedArticle

While I am discussing MRI. I also want to understand what information we are getting from an MRI. An MRI is considered to be safe, and does not involve any radiation. Instead it uses magnets and radio waves to take pictures that can create a 3D image of the body. It is important to stay still while the pictures are being taken so that it is a clear image.

The MRI of the spine looks at the bones, spinal cord, nerves and disks. The MRI of the brain can ensure that the shunt is working, but also give a clear picture of different structures of the brain.

So we are hoping for a successful non-sedated MRI which will show that everything is stable. My concern (which is always my concern) is that the change in bracing and the weak knees is a sign of tethered cord and that there is something going on inside that we can't see.

One Day More

Tomorrow is the day.

Work is done until August 8th.
My brain feels like it has been mush for the last couple of weeks, and while work has given me time to concentrate on something else, I am glad it is over.
Work gave me a send off with a care package, with a TMNT game for Nick, colouring book for Katheryn and some relaxation stuff for myself. (Including a scalp massager that I may pull out in the surgical waiting room...)

I have been making a packing list so that we don't forget anything. Sick Kids has a preparation checklist that I have been using. I like checklists and preparing, doing something to help to prepare for the unknown that is post-op.

So I'm packing for the hospital; Myself and Nick, distraction for the hospital, snacks for the hospital.

I'm not sure what Nick will need and what I should pack. I thought about new PJ's for Nick in the hospital as a surprise, but then someone mentioned that he will have drains and stuff and a hospital gown may be the easier option. I asked about needing to bring catheters, diapers and medicines, they will have everything we need.
What about clothes, we'll be getting him up and moving, so what will he need to be comfortable to move around. We'll have his walker to get into the OR and playroom, and we'll keep it with us and have this as his mobility option in the hospital.

For myself clothes that are comfortable to sit around in a hospital room. A sweater in case the AC is too high, flip-flops to walk around in. Also a pillow and blanket for myself for sleeping (they have a couch in every room for sleeping). All appropriate undergarments for myself (at Nick's original shunt surgery I found out that you can get any type of clothes you want at Sick Kids... except for a bra). And PJ's that are appropriate to wear in front of strangers (nurses and doctors who round at 6am).

For distraction I have a bunch of stuff. Distraction for me, like my book and the ability to blog/facebook and my phone (and the chargers). Distraction for Nick, colouring books, new videos, car games (that are small and confined for playing on the bed), and also distraction from pain, like bubbles and music.

Snacks are also something I need to pack. Something that will keep, that I will want to eat (instead of going down to the food court). Also very important is my own supply of tea and Splenda for the morning. Also my huge tea mug, water bottle and Nick's drinking cup.

We went through another workbook for Nick last night.
We drew pictures about Nick and his family. About what makes him happy and sad and what he will bring with him.

The top is a picture of Nick with spikey hair.
Under is Kyle with sunglasses (orange), Myself in purple, Katheryn is really tall (and has no arms) in pink, and Sammy has ears, nose, tail and 4 legs (2 big ones and 2 small ones).

We have a new Barbie for Katheryn (thanks to the SB&H) because Nick has gotten so much lately. She hasn't had any questions, and we have a plan for her while Nick and I are gone so she won't feel left out.

Urology says no prep, Routine medications, no more and no less.
So we are just waiting and preparing.
We have to be at Sick Kids for 6am, surgery time 8.

Thoughts, prayers, positivity and well-wishes are greatly appreciated!
Deep breath, I think we are ready.

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.