A Journey with Love and Laughter

Read about our family as we journey through life as a family, with siblings, school and spina bifida, and lots of fun and laughter along the way!

Wednesday, July 30, 2014

We are outta here!

We had a good night.
A really good night. Nick is obviously feeling better, and you can tell from this picture, because he is on his side, not just lying in a single position on his back.

We had some smiles first thing in the morning after the doctors rounded.

The dressing came off and we got to see what the belly button looked like. The glue and  blood was all mixed up and looked black. There was no red blood, no signs of infection, no pain (other than the tape coming off)

Nick was having a bit of pain and had just some advil, his pain went from his chest to his belly. We did some moving in the bed, and some 'gas movement' and the pain went away. We haven't had any poop yet, but gas is a good start.

Then it was time to get on his feet!
We were going to go out to the playroom in his walker, but ran into a little problem

Nick finished his juice and then that IV was good to come out! He was nervous at first and kept taking his hand away, but stopped paying attention when I was reading him a book and he didn't even notice.
And then we were good for a playroom visit. I wasn't sure how much stamina Nick would have with the walker, considering he hadn't walked anywhere since Monday.
But he showed me and he was off and running... literally. I had to tell him to slow down.

In the video that we had watched had talked about the playroom, so did the shunt book that we read. So Nick was very excited to go and visit the playroom.

They had a craft table that Nick want to do.
So we did a tissue craft. Nick did not do the intended craft, but he had a lot of fun making his own craft!

The nurse practitioner came to give me all of our instructions while Nick stayed in the play room. She reviewed the package she gave me, flushes, things to be concerned about and follow up. She also went through a presentation she gives to the nurses about the MACE
She answered all of my questions about volume of flushes (building up, starting at 10-20mL per flush and up to 360mL), leaving the foley in place (2-3 weeks), activity (as tolerated, no lifting), baths (yes), swimming (not until follow-up in 2 weeks). I have a package with all the stuff together. Also we qualify for some extra funding for ostomy supplies.

After this, we got ready to head out. Packing all of our bags, I gave Nick a bed-bath (he couldn't figure out why I was washing him in bed!. Then he got dressed. All of this activity and working over a couple of hours and how was Nick's pain?

After some lunch it was time for mommy to get to work and do the first flush.
This is the end that is hanging from Nick's belly. There is a little end and a big end. The little end is to inflate/deflate the balloon at the end of the catheter that is sitting in the colon. It is taped to Nick's belly so it doesn't pull.

And then for the flush, it is just 20 mL. I did it myself, no problem.
Afterwards Nick played with the syringe. No cramping, no pain. Everything was awesome.

Then it was time for me to do some trips to the car (while Nick took 300 pictures of his hospital room with my camera phone that I left with him).
And we are outta here!

Waiting for Kyle to get off work and pick us up, so we got as far as the playroom. But we are officially discharged.

I have absolutely no concerns about Nick being ready to go home. I can't even imagine staying for a longer time. Nick is just blowing me away with his recovery!

Tuesday, July 29, 2014


Nickolas had some visitors today.

We got him into a wheelchair and he was good to go. His IV was disconnected so it was just the saline lock. We got him into his Ninja Turtle PJ's and he was ready to leave his room.

He wasn't even shy about being the centre of attention.

He had been waiting for these visitors for weeks. Jennifer and Taylor, Emma and Mason, Katheryn and Zivah. Even Zivah's dad was there (working).

We went down to look at the water and try to eat. And throw money into the fountain.

Nick didn't eat anything, but he had fun.
Didn't get sore, didn't get tired.
The ultimate distraction!

Katheryn missed her brother as well, and Nick missed his sister.
She kept sneaking him kisses

After about an hour we went back up to the room and said good-bye.
Kyle and Katheryn stayed for a bit longer.

Katheryn read a story to Nick, and then they had to go home too.

Nick said he didn't have much pain (we've been doing small, medium and large to measure pain, using distance... like with thumb/finger and big like arms outstretched).

He wasn't very happy that Katheryn was going home and he wasn't.
But after some more Tylenol and a freezy, and a promise that I was staying with him and we should go home tomorrow and he was a little better.

I had, had a lot of concerns about being discharged so quickly. But really, seeing how great he has done through the day. I think that if we didn't have all the bleeding last night, and were able to do the out-of-bed part of the day through the night and didn't have all the pain, we would have been good to go.

But with the bleeding and poking at his belly, and pain that was last night and this morning... Even his cath volumes and appetite weren't that great until about 7pm tonight.

I am glad we are staying the extra day.

And there is lots of teaching to still do. I don't even know how to care for the MACE yet!

A New Day

So sleeping in a hospital room/couch sucks. Even with my own blanket and pillow from home. And no matter how quiet the nurses try to be I still wake up when the door opens.
I left the TV going (with no sound) so Nick would have something on if he wakes up.
And when I went to cath him in the middle of the night he was wide awake. So I left him with the TV and went back to sleep.

The dressing we put on helped, it gave enough pressure in his belly button to keep it from bleeding through. And so we we didn't have a to change his gown after our midnight (but that was gown #5)

Nick slept most of the night (probably a result of the morphine they gave him). And the team of doctors came in around 730 am, with his new nurse. (A male nurse that Nick has really liked).
We had decided to give him some morphine in the morning, because we knew that they would be coming to poke at his belly. And I didn't want a repeat of the night before.
It worked, he still wasn't happy, but he wasn't the crying and screaming in pain boy he was the night before.

This is what his belly button looks like under the dressing. (I hope it doesn't gross anyone out)
The blue tube is going through the appendix, to keep it open. I think it is some kind of foley catheter. Everything is clamped off so nothing is going in or coming out.
In the middle of the belly button looks like it is all blood. Some of it is blood, but some of the red is the lining of the appendix. It is where they connected the appendix with the skin that it is oozing blood. This is what was oozing blood and what they have been trying to put pressure on to stop bleeding.

This morning they did a bunch of stuff to stop the oozing.
Pressure... didn't work. A liquid solution with epinepherine to constrict the vessels to stop bleeding, the dribbled it on with a syringe and IV needle tube to get it right where it is supposed to go... didn't work. They got glue that they put all around it to seal it up.. didn't work, but did slow it down.
Once it started to slow down they decided to leave the glue and put surgicel netting on it, then a small gauze and a small strip of tape. The last resort option was to put in local freezing and then put a stitch or two.
(Flash-back from Nick's original back repair surgery where they had the exact same problem with a part of his incision leaking fluid and needing a couple of stitches)
Nick wasn't happy with everything, but he coped really good and just a bit of distraction was enough for him (and some tylenol/advil afterwards, but we had given him morphine as preparation for this too)
He was trying to smile... this is as far as he got

After people stopped poking at his belly Nick felt a lot better. He said that he was hungry so we ordered him some food. He didn't really eat very much (1/2 of a sausage and 2 bites of pancake and a sip of chocolate milk).
Afterwards it was time to start to get moving.
24 hours in bed, even if I got him moving side to side (which hurt) and moving his knees up and down (which didn't hurt), he had still been in bed for 24 hours.

We sat at the side of the bed first. My parents were here for a visit and so the 2 of us got him sitting. He's little, but with me trying to move him myself it was hurting his belly. We did that for a bit. I blew bubbles and Nick let them fall all over him. He blew bubbles, leaning forward to get to the wand.
He got tired quickly and said his belly started to hurt, so we lied him back down and let him have a break and watch some TV (teenage mutant ninja turtles DVD).

Then it was time for some more tylenol, and some pizza lunch (he ate about 1/4 of it). And ate all of the chocolate pudding, as long as I gave it to him. He will eat if he needs to, he just has no desire to eat if he isn't made to.

Afterwards we got a couple of smiles

Nick is still working on drinking. He is a horrible drinker and one little water bottle has taken all day to drink. In the meantime this IV stays in place. He hasn't been moving his fingers so I've been working on that to prevent them from swelling up.

Then it was back up in the chair and we did some board games. He won. (Against mommy, grandma and Michaelgelo)

As the day has gone by I see Nick improving more and more. We've stood at the side of the bed, did a couple of (well supported) steps. And we've been trying to get him out of the bed for small amounts of time. He is starting to want to get up and onto the couch or the playroom... which is a huge improvement from this morning
... There is a real smile!

The docs have come in and talked about discharging home, but I really feel we need another night to make sure that everything is going well. Even though we have been on the up-swing all day. He just spent 24 hours in bed with an oozing belly button, I don't want to end up home in his bed with the same thing.

We've been pushing him to move more, and the dressing has stayed clean. Which is fantastic! But we haven't had him moving to his full potential yet, and I want to make sure that that won't cause more bleeding.

We will have teaching and a plan, and tylenol/advil for pain once we are at home.
Other than dealing with the dressings we haven't done any flushing at all. We are waiting for the nurse practitioner who will see us tomorrow.
Hoping for a very uneventful night!

Monday, July 28, 2014

A Rough Evening

We've had a bit of a rough go of it this evening.
Nick's pain was good, until it started to run out and then he really wanted me to be with him. He started to notice an IV poke in his right hand (a red dot), the IV in his left hand, he didn't want to move or pee or do anything.

That was fine, I sat by the bedside and just held his hand.

We did some of the activities recommended for distraction
Blowing bubbles, reading and watching his favorite movie.

The bubbles were not a big hit.

His incision has been oozing.
The dressing they originally put on was a 4x4 folded gauze held in place with a strip of tape. That bled through. So they replaced with with a couple more strips of tape that bled through, so a tagaderm with gauze (a large clear bandage). That bled through. Then pressure dressing tape, which bled through.
Doctors had been in to see through the evening. It seemed that it was the mucosa or lining of the appendix is friable (which means that it bleeds easily), so it was oozing blood. Pressure applied to it would help, so they "kept and eye on it"

Of course it hurt Nick every time they touched it and pressed on it.
The final result around 8pm was for 2 doctors to come and apply pressure manually and give a vasoconstrictor (to help clamp the vessels) to try to get the oozing to stop. Nick had had enough, I tried distraction and calming techniques that labouring woman had taught me. We could distract him by counting and telling stories about what was happening on his favorite Backyardigan show.
But in the end he was crying for it to stop and for us to go home. He didn't want an operation anymore.
Once they stopped he calmed down quickly.

I have a picture of what it looks like. But I'm not going to post it yet. I think this is an isolated occurrence to Nickolas and it won't do any good for 'teaching'. I might do something before and after.

Right now we are problem solving ways to apply enough pressure to stop this bleeding. She packed it, then put a bunch of gauze over, but we needed more pressure to help stop the oozing. His nurse and I worked together, and as a good labour and delivery nurse, we did a nice c/s pressure dressing, (think hip to hip thik white tape, pressure dressing.)

They wanted to use the elastoplast, but I'm pretty sure it has latex in it.But Nick got some morphine and he says that he is all good. He actually slept through the nurse and I working together for the latest pressure dressing.

The docs will come back around for rounds in the morning and I'm hoping we will have this little set-back behind us.

Thanks to everyone who continue to wish us luck and a speedy recovery! The nurses here have been great. We've had all of the charge nurses and experienced nurses as well as all kinds of level of doctors (residents and fellows) in to try to get this all fixed up.

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!

Sunday, July 27, 2014

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.

Friday, July 25, 2014

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