Day 60 - Sista Visita

Amanda drove all the way out to visit this weekend. She assisted Daniel with his power protein breakfast of sausage, bacon, toast and protein juices. Amanda worked some lotion in to Dan's burn areas, massaged his face and soothed his itchy arms. Once breakfast was complete we all took a loop-walk across the 3rd floor.

Today Daniel's pain seems to be more under control with an additional bump to his medications. We've also discussed timing for administering pre wound-care pain meds and PRNs for pain that we can request for the additional PT/OT tasks he's taken on since yesterday.

Dawn was calculating the time needed to complete all the tasks we have for Daniel and there's hardly time in the day to do them all. Here's a partial list of daily tasks for Daniel. Some of these tasks could be doubled up, but we don't want to make Daniel too uncomfortable with all the rehabilitation that's being thrown at him. With each day we expect more time spent wearing the devices (airplane splint, MPA, face plate) since the more each of them are used the better the outcome. Here's the current goals we're trying to perform with Daniel:

• MPA (mouth stretching device) - wear 2x per day for 30 minutes = 1 hour
• Face plate (stretches & heals skin on face and neck) - wear 4-6x per day for 30 minutes = 3 hours
• Airplane splint (stretches shoulder, armpit and right elbow) - wear  4x per day for 1 hour = 4 hours
• Gym therapy - stretch with big ball, use pedals to work arms/legs
• Stretch neck to left and right to increase flexibility
• Walking - we're taking Dan on short 10 minute walks every 2 hours or so.
• Eating - Dan is taking up to 90 minutes to eat a meal if we have him using his hands to feed.

Add in wound care, bathroom breaks, medication and measuring vital signs by nurses and you can see that Daniel has a very full dance card.


This afternoon Daniel's PT A. stopped in to check on how his new devices are working. It so happened that he was wearing his airplane splints at the time so we asked about his wearing that PLUS his face plate and she helped to see how that would work. This configuration was very uncomfortable for Daniel so it was good for her to see the struggles he was having with it too. Now he's back in bed and wearing just the face plate and he seems much happier with it on.

In a short while Daniel will be premedicated for a trip to the tub room where we will try to have Daniel take his first shower. This will be his first shower so it will be good to see how he likes it. He used to love taking long warm showers so I hope he will enjoy this activity still. I doubt he will be able to do much with the actual washing since his arms are so limited in their movement, but we hope he still can enjoy the experience.

I hope it goes something like this:

Tonight we will be leaving early to enjoy a dinner out with his sister and grandparents at Old Major. Then it's back to it tomorrow.