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 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.