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!

Tuesday, June 21, 2016

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

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