Emmett had a good rest of his birthday. A friend brought cupcakes to school and they had them at lunch and sang to him. His team won their soccer game and we had some time in Jim’s room afterwards for him to open his gifts and we had pizza and lemon bars that another friend made for him. Thank you to everyone who helped make his birthday special ❤️!
I stayed the night and Jim was up a lot in the night and got nauseated a couple times. I did not get much sleep, but he had an exceptional nurse that responded quickly and took great care of him.
Today his appetite is not great, but he is really struggling with the pills. The director of rehab checked in with us as Jim was trying to eat breakfast and when I mentioned that he hadn’t gotten to order breakfast and wanted something else, the director himself ran downstairs and got what we had requested. It was super nice. Jim has never been good with swallowing pills, he even chews ibuprofen. Now he is taking all of his medicine in pill form (has an IV in just in case). We have tried crushing it up for him and giving it to him in applesauce, pudding, and ice cream. He just really struggles.
His first therapy of the day was occupational and he answered a lot of questions and then took a shower. Occupational therapy is designed to help you master your day to day tasks like dressing, bathing, etc. we had a good time chatting with his therapist. It was from about 9-10:30.
After OT I left while his parents stayed with him. I took our dog on a walk, did some laundry, took a shower, ate, etc….a very good break for me. While I was away the speech therapist came. She did memory type activities testing his long and short term memory and it lasted about 30 minutes. It seems like his long term memory is very good, but his short term memory is not great at this point. He often forgets if something happened today or yesterday, and can’t remember when he ate or did other things. His lunch came and he was pretty tired and not very motivated to eat. He also had a visit from 2 of our pastors, Ryan and Patrick. I believe the rehab doctor may have also come in and they are looking at doing at least a couple of the pills in liquid form, so that might be a good change.
Next he had 1.5 hours of physical therapy. It was with a physical therapist that had witnessed one of his seizures. He was really impressed with how much Jim could do. I missed the first part but got pictures from Jim’s mom. He walked all the way to the rehab gym with a walker, did stairs, got in a car simulator thing, walked all the way back to his room. Then he got a wheelchair ride back to the gym and rode a stationary bike type thing.
His minimum stay in rehab will be 5 days. They do assessments and determine how much more time he may need. If he keeps progressing at this pace I feel like he’s going to bust out of here sooner than later. Please pray for his appetite, medicine taking, and restful sleep.
Jim has done another 2 days of therapy and made amazing strides. In fact, the whiteboard in his room now says “anticipated discharge date: 9/28/24”. His therapy team and doctor met this morning and felt like even though he is approved to stay through Monday, they would feel ok about letting him go Saturday. He has continued to sleep very poorly and we are hoping that will get better rest at home.
They have switched most of his medication to liquid form, which is much easier than pills for him. They also found that his sodium level was low, which is common after brain surgery. Low sodium can lead to confusion and even make seizures more likely, so it’s very important to correct this. The doctors prescribed him a 1000mg sodium tablet to take 3 times per day. He absolutely hated it, since he really couldn’t swallow it. Today we talked to our nurse and found that Cup O Noodles have 1160mg of sodium. They also have broth here that is about 1000mg. So he has been sipping broth today instead and that has been a good change.
His light sensitivity has been getting better as well. Yesterday I took him on a wheelchair ride outside and he wore sunglasses, but wanted to keep going (we realized it’s probably the longest he’s ever been confined to the indoors). Today he wore his sunglasses for just a short time this morning and went the rest of the day without them, even outside. In fact, we have a light on in the room right now, which has been unheard of!
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| View from Jim's room on the 6th floor rehab unit |
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| First time outside in 2 weeks |
A wonderful team of ladies from our church cleaned our house very thoroughly today. They left flowers and snacks and I bet our dog enjoyed having the company. It will be such a blessing to take Jim home to a freshly cleaned house. Jims parents also did a lot around the house to organize and get our yard in shape. And we have some co-workers of Jim’s coming to blow out our sprinklers to get ready for winter.
Today we went full on beauty salon in the hospital room and I trimmed Jim’s hair and beard and clipped his fingernails.
Some highlights from therapy: taking the stairs down to the 5th floor and back up, taking the Berg Balance Scale test and passing 100%, walking with ski poles and a cane, doing a soccer drill etc. Speech therapy should really be called cognitive therapy in Jim’s case. They are working on Jim thinking of words, playing memory type card games, remembering lists of words after being distracted for a while, and finding routes on maps. Jim’s short term memory and focus seem to be giving him the most trouble, but he seems to be making big strides.
Dennis, a friend from church, sat with Jim this afternoon. He is a retired nurse anesthetist and had great stories. I think Jim really enjoyed visiting with him. Thank you to all who have visited, and spent time sitting with Jim so I can have some little breaks
Jim’s parents left early Wednesday morning and mine are scheduled to arrive Friday evening. I’ve had a little more back and forth from the hospital to make it work, but the boys have done great.
I think the next day will be especially busy with getting ready to go home. We need to figure out what medical equipment we will need (probably a shower seat, walker, cane), find some home health therapy services (I have a list of places), and figure out if our pharmacy will be able to get liquid forms of his regular meds. We are still waiting on final pathology results as well.
Jim completed his last day of therapy, got his staples out, and we are headed home
A few more pictures of Emmett playing soccer:
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