Day 4 - Out of bed

It was Monday, which meant that we had some great things planned for today!

Physio was going to be coming today, the dressing was going to be coming off and we were going to be one step closer to discharge. But first there had to be some eating and drinking so that we could change the IV over to a saline lock.
Nick is not the best drinker at any time, so we really had to work on drinking. But after breakfast that pesky IV line was gone!

I also put up Nick's All About Me poster he had made for school last week. I thought it was perfect to show all about Nick

To help to prepare  for our  first goal, getting out of bed, I wanted to get Nick propped all the way up. So it was time to pull out the lego. At first his back was hurting becasue he was up higher than before. But pretty soon he was distrated by that

And then I had him up at a full 90 degrees, and had him reaching and leaning forward.

He didn't have any problem leaning forward.

That got us all ready for the next step!
Perfectly timed, physiotherapy and occupational therapy came to see him. There wasn't so much from an OT perspective, he is still guarding his IV hand, but he is moving it and using it (and putting together lego with it)

But we got him sitting at the side of the bed. The transition was sore for him at first, but if he could get past that part he was able to sit and help us swing his legs over the side of the bed.
We did try to stand at this time (which is why his braces are on), but it was too fast and he had too much pain. So we sat back down and PT was going to come back and we were going to pre-medicate so we could get more work done.
I did have a quick vision of going home tomorrow if he could stand, but it was just too fast for him

While we waited, I pulled the lego back out. He could tolerate about 15 minutes of sitting like this before having to sit back down.

But over the course of the day we got our finished product!

 Nick also had a special visitor. Jenna, another adult with spina bifida came for a visit. She knows 5C very well and has had multiple surgeries as a child and had lots of support for Nick.
He was tired from all of the work he had done so far, but he did get a visit before passing out.

But he looked so cute sleeping

Grandma and Papa Bartley came for a visit too

They were here when physio came back in the afternoon. We got him standing up, it still hurt, but not as much in the morning, and he was able to sit at the side of the bed easier as well.

But the standing was hard. He had difficult standing up straight and kept hunching over and leaning his bum. I guess that is what happens when you haven't been out of bed for 5 days!

We also did a little bit of walking around the room. I'm not really sure why he grabbed the walker like this.

He needed a lot of support, and it was more shuffling his feet while she was holding him upright, than actually walking, but it is a start. And I have to keep telling myself that. It is a start.
My heart broke a little bit seeing how much he was struggling to walk. But I am sure that tomorrow will be better, and the day after and the day after. One step at a time, for real.

Nick hadn't been eating very well, and threw up the little lunch he had, so we gave him some zofran, which settled him enough that he snacked.

And this is how he ate dinner.

His dressing came off this morning as well. His incision is looking good. But it is big (about 3") And he is very worried someone is going to touch it, but with a little distraction he was actually really good with the dressing coming off. 

Sorry if it grosses anyone out, but it looks good. Now that the dressing is off he isn't really bothered by it.

Every day he is getting better. Tomorrow I am hoping he will be able to stand with less pain and take independent steps in his walker.
BUt here is his smile of the day

And this is how he is fighting sleep at 1030 at night (must be that nap recharged him!)

Day 2 - A better afternoon

We had some visitors today! Daddy, Katheryn and Grandma Ridding all came for a visit! Nick had been asking since yesterday for them.

Katheryn got a new book as a present and made herself at home.

Nick and Daddy started playing some games. And Nick started moving really well. Lifting his arms and playing no problem (some more new toys helped with that too).
And once he started moving it really made a difference.

He played thumb-wrestling with Grandma

He was still getting his pain medication, but not using the NCA as often anymore. It would still hurt him when he was in the middle of moving. But we did that when katheryn was out of the room. And instead of lying like a board he was helping more.

Nick got a bunch of stuff to play in bed. Including R2D2 bop-it game. some colouring books and he even got some home-made pork chops from Daddy!
Katheryn played with Nick as well (for some reason my phone isn't uploading the pictures I took of her.)

But she is the one that got some real smiles from him.
It was amazing to see Nick improve by the minute.

 Katheryn enjoyed being with her brother and exploring his room.

Everyone stayed until about 4 and then left. It was a long visit and I was exhausted, but Nick was still full of energy. He really wanted to have the pork chops that Daddy had brought for him

He didn't finish the whole plate. mostly the noodles and half the meat. But it that almost counts as a full meal for him now

After dinner it was time for the bowel routine. I was trying to get some pictures of Nick smiling and he really wanted to take a picture of me!

I wish I could have had a double siided camera. This picture doesn't give his smile justice.

 We also had to restart his bowel routine. It had been 2 days. I had lots of supplies, becuase Nick still coudln't get out of bed. He really didn't want to do it. But we had waited 2 days and couldn't wait any more. He had also been leaking from the stoma, so we couldn't wait anymore.

It went... ok. I got the whole 500 in, but not that much out. Maybe about 100. But the nurses and i kept changing his position, which helped to get things moving. I'm not sure what else we can do. Anesthetic is notoriously constipating, as well as the morphine he has been on. And he hasn't really eaten in 2 days (today was the only day I would really say he ate). He is not really in any pain, except from his back. So that is a good sign
Hopefully once he is able to get up (tomorrow hopefully) we can get back into our regular (ha ha) routine.

Right now it is early bed time for all of us.
Nick is all ready with his new flashlight-lightsaber. It is not going to leave his hands all night

Day 1

Today was not a great day for Nickolas.
It was a tough day

He still needs to lay flat, on one side or another and we turn every 2 hours or so.

Last night was not great because nick would wake up in pain and then we  would have to play catch up. So the pain team came today aand we decided to change the PCA (patient controlled anesthesia, so only he presses a button when he is in pain and it gives him a small amount) to a NCA (so only the nurse can press the button). We also stopped the continuous morphine and moved to an oral dose.

It also meant that Nick has been more alert.
But he is afraid to more. So he is stiffening up. So that makes it more  painful to move. Even moving his hands and arms. He just lies there like a board.

I have been working on it. But some of the toys I brought he needs to be sitting  up more. And that will be tomorrow. He has been asking when Katheryn will come to visit (tomorrow) and so every time he falls asleep and then wakes up, he asks if it is Saturday.

We did have a Jedi battle. He is starting to get swollen from not moving. I have been getting him to stretch and open and close his hands. But he doesn't really want to do anything.

We've been watching the movies that I brought specifically for the hospital. The Child Life Specialist came and brought us some stuff, some crafts and things to get his hands moving. But Nick wasn't  very interested.

He doesn't know what he wants. But he knows he does not want to turn over.

We have been reading his Falcon book. The volunteer came at one time and stayed and read to him while I left the room for a bit.

We also had a visitor! Lisa and her friend came and they brought me some home made mac and cheese!

Nick hasn't been eating very much, just a couple of bites here and there.
We have had lots of different people come in. Starting at 7am when the doctors first started rounding. We have also seen the pain specialists, pharmacy, the nurse practitioner, Dr Rutka, and some students (we had a student who was very happy that I let her do the catheter).
So far everything is looking good. Tomorrow we will look at getting up.

We had done lots of hand holding today.
Nick has been trying very hard to smile. He says that he is smiling in this picture.

Our nurse for the last 2 days (the one I know from school and who had him when he was born) finally got a smile out of him before she left today.

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.