Saturday March 11

March 12, 2017

Weekends are pretty low key, G had one therapy session this morning at 9 and then he was done for the day. I think he needed the rest because he took a LONG nap. 

​​So, here’s a video of G practicing with the walker and some braces to help reduce the clonus. They really seemed to help and they also made his right foot placement pretty spot on. The therapist taps or puts pressure on a muscle to help shut it off. 

Friday March 10

March 11, 2017

Lots of work on getting G to try to control his clonus (spasticity), not only when he flexes his foot but when his muscles start getting tired. It seemed a little better today. He worked on shifting his balance from one leg to the other and on keeping his left leg straight. It wants to pull in toward his right leg. The left leg also wants to buckle. G and his PT figured out yesterday that his quads and his hamstrings are working against each other, both activating at the same time, so they will be working on that next week. 

His finger movements are getting better each day, and he’s got some fine motor dexterity coming too. 

Pain wise today has been a 4-7, and it seems to be creeping down slowly. It’s mostly in his neck and shoulders still. 

Thursday March 9

March 9, 2017

A couple of days ago when G figured out how to open and close his hand he challenged I- to a thumb war, this was the hardest we’ve all laughed in some time. Imagine him unable to fully control his hand, but with way bigger fingers and little I- with small fingers, she won most every time. 

G is working so hard, pushing himself in every session. They ask him to do 10, he asks if he can do 15. They ask him to hold a position for a minute, he asks if he can do 3. The improvements he’s making are amazing. 

He’s worked on left arm strength today, and on his core muscle strength. His right arm tries to do his whole body’s work, so they are working with him to use his left side more to gain strength there. He also had OT in this morning to offer suggestions for making personal care easier. 

His pain levels are around a 5-6 most of the last couple of days. A few spikes to the 8’s, and a couple of dips to a 2 🙂  

Each day he amazes me with his determination and strength. 

Wednesday March 8

March 9, 2017

Lots of therapy today, G also got fitted with a support for his left arm, it gets heavy since his muscles aren’t providing support. This is G using a walker for the first time, a person on each side helping his feet/legs. He has incredible strength in his right arm, and his right leg is regaining a lot of its strength, he can practically support himself with his right side. His feet wanted to get tangled up, but I cried seeing him walk. 

He has some clonus ( https://www.ncbi.nlm.nih.gov/books/NBK299194/ )which is a rhythmic jerking of his muscle when his foot is flexed, I think it gets frustrating, but there are a couple of things to make it stop. This machine is used to strengthen his legs and to help stretch his achilles. 

Tuesday March 7

March 7, 2017

Two amazing things today. G was able to make a fist AND release it!!! This is a big deal. And he was able to stand himself up from his chair!!! Also huge. Wow! 

His schedule is pretty busy during the day, OT and PT work with him for three hours total in 30 minute to one hour increments. I am able to go and watch what he’s working on. 

Monday March 6

March 6, 2017

Ups and downs. Today we got the official estimate of G’s length of stay. 6 weeks. I think hearing that was a big disappointment to G, he’s ready to be home. I know we were told they estimate on the long side because when dealing with insurance it’s easier to overestimate and not need it than to underestimate and request approval for more time. 

I got trained yesterday to do an independent transfer with G from bed to chair and chair to toilet and back. This was a huge relief for G in that he won’t have to wait for help and he can have some privacy back. However, I was informed that I shouldn’t push to help anymore than that because insurance will say I can just help him at home. 


This is the OT using electric stimulation on G’s left arm. The staff and resources here are really pretty amazing. G’s stomach muscles are getting stronger and he can hold himself in a sitting position pretty well now, his head still hangs a lot, but that’s getting better too. 

I- and I are staying in a small studio type quad for the nights, it has a shower, mini kitchen with fridge, microwave and coffee pot, and an apartment size washer/dryer, and a twin bed. 

Sunday March 5

March 5, 2017

We are slowly adjusting to the rules here at Madonna. They have many safety precautions in place to protect patients and staff. This includes a monitor in G’s room to make sure he doesn’t try to get up, which led to us getting in trouble when I tried to help him get to the bathroom, that was a no-no. G said he felt like he was in lock-up, so I made sure to let him know it was all for safety and he could leave at any time to which he said he knew, and wants to get the most out of being here, but when you gotta go, you gotta go. They have a device that lifts him out of his bed or chair and it requires 2 people, so sometimes it takes a bit. I was told I can get training on that so they would only need one staff member plus me, so I will ask his PT today. His pain levels have come down some, as low as a 4-5 for part of yesterday, although his neck is still very sore. He was able to shower yesterday and got some of his staples out, however there is still a lot of matted hair around some staples, so he will shower again later today and try to get some of that loosened so they can try to get at some of the remaining staples. 

Since it’s Sunday he only has one therapy session around 2 pm, I think he was excited to see some of the equipment yesterday and how it will be used to help him relearn using and controlling his muscles. One estimate for length of stay was 2-3 weeks, but we should have an official estimate on Monday. This hooks up to a sling, it reminds me of a hammock chair, that is used to move a patient from bed to chair. It seems so delicate and yet is able to lift up to 600# I think. It has got to be a back saver to the staff who are working 12 hour shifts, and have many patients. 

We were able to go for a little walk yesterday and get a bit of fresh air which was nice. 

Saturday March 4

March 4, 2017

It’s been a busy day. They got G in a wheelchair around 7 am and he’s been assessed by Physical therapy, speech therapy and occupational therapy. He won’t need speech therapy so that will give him more time with the other two. They are expecting him to be able to walk again and to leave independent. He will have some residual weakness. He’s eating lunch and hoping to be able to lay down after that for a bit. He will get a shower shortly and then should be getting his staples out. 

Friday March 3 (pt 2)

March 3, 2017

G arrived safe and he is tired from the trip. The hospital and staff seem really nice. I may have to communicate by email, as it seems Lincoln is a dead zone. 

Friday March 3

March 3, 2017

Nebraska bound! G left a little before 10, and Iris and I are heading that way now.