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.

Camp Week

The kids had their summer camp this week.

Katheryn went to dance camp, and Nick went to Grandview camp.

Every day they had fun and crafts and swimming.

They came home every night excited about what they did all day... and exhausted.

Katheryn liked the the dancing and learning Ballet and Jazz dancing. But at the end of the week what she said she loved the best was the swimming.
Considering I have 2 left feet and no coordination, but can swim like a fish, I think we'll look at some swimming lessons in Katheryn's future. At the end of the week they did a dance recital. Katheryn looked like she was having fun, but  she was also nervous about performing.

Nickolas did Disney camp at his camp. He liked being back in his school and playing in his playground and swimming in his swimming pool. He brought home crafts every day and singing all of the songs they learned during the week.

Nick has been singing his favorite song from camp ... Boom Chicka Boom... all week

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.

Whispers

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.

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.