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 3 - Upright! and Fathers Day

Last night was not the greatest.

Nick started to have side effects from the morphine. Just after midnight we moved Nick and gave him a dose of morphine to help. We moved him and he had some pain, but then he was getting really winy and kept bringing his legs up and down. He said he didn't have any pain, but he just wastn't comfortable.

Then he started saying he was really itchy. The nurse was concerned about hives or a rash, which he didn't have. So she wanted to just give him lotion.

I suggested that it could be a side effect of the morphine, rather than a reaction to it. So she got an order for some Benadryl.

But in the meantime Nick was so upset about the itching, he just wanted me to  rub his back with a cool cloth. He would fall asleep, I would fall asleep and then he would wake up and say how itchy he was. This lasted about 30 minutes.

He also leaked all night and was worried about leaking all night. Usually jsut after we would get him settled on one side (the movement). So we would have to move him around to get him clean again.

We repeat this all again at 3am. (After the second time we stopped the morphime)

I was so exhausted. 

In the morning when the doctors came to round they said everything was looking good. Our plan for the day was to try sitting all the up in bed today. And tomorrow work at getting up out of bed. And hopefully discharge Tuesday

I missed when the pain team came around (after the doctors rounded i went back to sleep). But they stopped the IV morpine and the scheduled morphine and changed to Advil and Tylenol (like we give our C-section moms) and oral morphine as needed. They thought that the IV morphine was causing the itching. And they reaffirmed that it was a side effect and not an allergy.

Katheryn and Kyle came and we got to celebrate Fathers Day

The kids were so proud of their cards and gifts. And Katheryn had wanted to wait for everyone to be together before giving Kyle their gifts. Katheryn thought that her card was hillarious! And it was

Kyle also got a light saber, which is also BBQ tongs.

Nick has been much better today. We also had agoal through the day to keep increaseing the head of the bed. And even with the absence of morphine, he was still comfortable.

Katheryn was happy to be able to play with her brother and was all over the bed (carefully) to paly with Nick.

Maybe a little too close...

They played UNO, and had a lot of fun yelling "Uno!"
Nick won a game and katheryn won another game.

After a while we kept increasing the head of the bed and he was still comfortable and playing. We got to our goal of sitting at about 60 degrees.

 This is such a huge change from yesterday. Every day he is getting better and better. Now, today, I feel comfortable with surgery being the right decision. And I can see discharge in our future (but not tomorrow).
But we got to our goal of sitting up in bed. And he is eating all of his meals again

Tomorrow we will have a goal of sitting at the side of the bed and actually getting up and out of bed. We even brought his braces and walker (and crutches) in.

After everyone left we had some quiet time and coloured some pictures (both of us coloured). While Nicks night routine is back on track. 

I think we will have a good night tonight.
This is our Day 3 smile.

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 2 - Morning Frustration

Nick had a better night than the night before. They weren't moving him as often, about every 4 hours. So he was able to sleep more without pain. And I slept better as well.

When the doctors rounded I asked about sitting up. But the ?resident said he should be flat again today, up to 30 degrees only for eating. Nick was not very happy about that and started crying. It took a while to get him calm again. All he wants to do is get out of bed. He tells me "Mommy, I don't want to be here" and it breaks my heart a bit.

I can see him getting frustrated. He didn't want the surgery, he thought everything was fine. And now we did the surgery and he is in pain and not able to move and get out of bed. And he didn't even want this!
I tried explaining that afterwards he will be able to be stronger and run faster and not fall down as much. It doesn't mean that much to him.
He also doesn't want to move back and forth, because it hurts. I have been trying explaining to him that it is important for him to move. But I can see him getting frustrated and feeling that he is not in control and no one listens to what he wants.

I am hoping that once Katheryn and Kyle come he will be feeling better. Right now he is frutrated.
But I think our pain control plan is working better. He is getting oral morphine around the clock, and tylenol and his nurse control NCA helps to pre-medicate him before he moves.

Its funny. As soon as I wrote this someone from the pain team came around. Even Nick says he is feeling better today and is less sleepy as well.

Dr Rutka also came around. He said that Nick can start to sit up some more (and we will follow his direction over the resident). But only for short periods of time.
He also said that antiicipated discharghe his mid-week next week.
So our 3-4 days, turned into 4-5 days and then into about 6 days. I packed for 5 days so it shouldn't be a problem. But if it is Saturday and he hasn't even sat up yet, I'm glad we aren't going home on Monday.

In the meantime, this is my view

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.