Day 6 - Home!

Our day started early when the doctors rounded at 630am!

And we were good to go home today!

We follow up with a MRI and Dr Rutka in 2 months. In the meantime, no swimming for 4 weeks, no contact sports, amusement park rides, wrestling, gym or recess until we see Dr Rutka. I asked if Nick can still use his bike (describing it) and he said that if there wasn't risk of him falling, then it was OK.

The removed, and replaced, 3 vertebrae (T6-T8) and it takes time for this to heal.

Because we were already up, and getting ready to go home today I thought it was a good time for Nick to have a bath.
We was very excited at the beginning. His incision is high, so he can sit in the bath without getting it wet. I washed everything, but left his back for last.

But one of the things that I needed to wash was his back and incision. The nurse said not to use bath water to wash the back, but that it was OK to wash with soap and water. She said to use the shower head (which was way too strong), because it gives fresh water. Nick hates the shower.
So I sprayed the water onto my hand and then dripped that water down his back. He did not like that, he was crying and scared.

When breakfast came he had his appetite back!

We prepped him with some morphine and then physiotherapy came and we got started!
Nick was walking even better than yesterday!

Today we talked about how he goes up and down the stairs. In regular physiotherapy we were working on walking up and down the stairs. Holding onto railings or with his crutches. But that is on hold right now and so we wanted to see how he would go up and down the stairs now.

He did pretty well. Going down the stairs he just needs to make sure he leaves enough space so he isn't rubbing his back on the stair. I got some physio exercises before we see physiotherapy at Grandview next week.

Then we had a quick game in the playroom while we were waiting for our discharge papers. We also got a prescription for morphine and Zofran in case we needed it (I would much rather have it and not need it, then to wish we had it).

Because we were good to go home!

Our bags were packed (pretty good for 6 days, I think)

And then Kyle came to pick us up

Nick decided to go undercover with his new hat

We had a bit of a delay, because when she was giving us our discharge papers she said the laminoplasty was T6-T8, and I had thought it was T7-T10. So there was a delay while we waited to find this out. This is also where we found out that they did do 3 vertebrae.
But we did get on our way

 We weren't sure how Nick would be sitting in the car and the car seat, but he didn't have any pain.

He had fun taking selfies on my phone during the car ride.

When we got home Nick got to have (a couple of) snacks and a rest on the couch.

Katheryn was still in school, so Nick had some doggy snuggles.

And then he finally fell asleep for a nap

Nick has been feeling pretty good to be home. He really wanted to go and pick Katheryn up. He made the trip, and visited with Jennifer without any pain

Nick and Katheryn have been playing together well. We talked with Katheryn about some of the new rules with Nick. No wrestling, being careful of his back and no pushing or making Nick fall down.  I showed Katheryn his back so that she could understand why they had to play more gentle for a little while. And we talked about it like when she broke her collarbone.

We are really glad to be home!
I am really looking forward to my own bed tonight!

Day 5 - Almost there

The doctors came and rounded this morning. Everything is looking well. They asked about how Nick's mobility was, and how it went yesterday. I talked about how he got out of bed and took some steps being fully supported by the PT. They said, OK sounds like he is ready to go home. What?!
While I really do want to go home, I am concerned about how he will be able to move around at home.
So we have some goals for today

And some goals before we can go home.
One of the things I worry about is his night routine. He needs to be able to sit on the toilet for at least 1 hour. And pain control so he can at least walk, I don't want to have the wheelchair in the house as his way to get around the house. And his appetite. He still wasn't that interested in eating and drinking.

I talked with the nurse in the morning about my concerns, and so then the conversation shifted to discharge tomorrow. But Nick did decide he wanted to get dressed today.

Physio came in the morning. We had a couple of tears getting out of bed. He was able to do it, but was still very guarded and afraid to stand or to take any steps. He was crying and saying his back hurt.

So we came up with a new plan. Morphine for pain, and then come back in 1 hour. Nick was happy with this decision. He had a bit of a rest for half that time, watching some cartoons. I gave him a time limit of resting before we could do something else.
Sitting at the side of the bed.

Yesterday he tolerated 15 minutes. So I wanted o see what he could do today. And we got the whole Lego done before Physio came back. Nick didn't complain about his back at all

When Physio came, Nick was willing to try to get out of bed.
It took a lot of persuation

And some tears that he couldn't do it

But once he started, he was able to take some steps. It took a lot of encouragement and some pain and tears. But he was able to get out the door.

And then we kept trying to get him to do more.
We went to the diamond in the floor in the hallway

And then if we were already in the hall, we were going to go to the playroom. And then Nick got to rest and play some games. We played a couple of games and then Nick started feeling better. Physio was going to come and see us again in the afternoon.

Nick wasn't ready to go back to our boring or room. So we did a puzzle and visited with another mom and her son (who we had visited a couple weeks ago)

Pretty soon it was time for lunch and time to head back.
Again, getting started was a little bit rough

But once he got moving he started feeling better (but he was tired)
(I told Nick he didn't have to smile for my pictures, to just make whatever face he feels)

Then Grandma Ridding came for a visit and he felt lots better!
He spent the whole time sitting up in bed and playing

And then he really wanted to sit up in the blue chair (and I sat in his bed)

He got some more morphine to prep for getting out of bed. And it worked! When physio came Nick asked if he could use his crutches! He tried really hard, and he did take some steps, but it hurt him.

When it was time for his walker, he was ready to go!
We didn't stop at the play room but kept going into the hall. Nick was picking up more speed as well

We needed to rest on the benches, and then after a break we worked on some more exercises.
Raising his knees and lifing his legs straight. And also some knee bends

Grandma was helping

Then we went back to the room for some bum lifts.
And we will continue with these 3 exercises until we are able to start a Grandview (hopefully next week)

Afterwards Nick didn't want to rest,  he really, really wanted to go downstairs and explore. So we borrowed a wheelchair and went to explore.
We went to the gift shop (and bought more lego) and then just walked around.
Nick wanted to go outside, so we went and sat outside for a bit

Nick wasn't tired and was feeling good. it made me feel really good about going home tomorrow.

When we got back in the room, Nick wanted to explore all of the things in our room that he wasn't able to see from his bed. It was fun seeing some of the nurses Nick has had, and the volunteer June who has come and stayed with him during the last couple of days, see him up and about.

Our next hurdle was our nightly routine. They brought me a portable commode with handles to help, and with some activities in front of him (yes more lego) he was ok. The only issue was that they only had one size of commode, so he kept slipping. And when he was slipping he would tense and it would hurt.
So I ended up padding all around him, with extra on  the back, and bulking on the side of the seat and I put a rolled up towel between his legs to keep his knees spread for more stability.
It worked pretty well

We phoned home and talked with Kyle and Katheryn. But I think everything I was worried about this morning was addressed during the day.
I wrote some questions on our board to ask in the morning, but our night nurse went through them all.
Including that he should have had a bath a couple of days ago (Day 3) which no one even remotely mentioned. But by this time it was too late, so we'll do it in the morning.

But I am thinking that Day 6 will be discharge day!
Here is our smile of the day

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!)