Eli has two splints for his left arm. He wears one twice a day for four to six hours at a time and the other one is throughout the night. He also has a boot he wears on his left foot at night. Last week he was fitted for leg braces and we got them Friday. He's adjusting to a wearing schedule for those (one to two hours at a time multiple times a day until he wears them full time through the day). We had to buy new shoes for him that will fit with the braces inside them. Today he wore them for a three hour stretch and had the new shoes on (two sizes bigger than his non-braced foot size to accommodate the braces). The purpose of these splints, boots, and braces are to help him utilize the muscles he "knows" he has control of and to help maintain the muscles he isn't aware of. For example, he's not walking or bearing much weight on his legs so we have to do lots of stretching to keep those muscles from getting weaker as well as use the braces to keep his fingers/toes/hand/foot in proper positions since he can't keep them there himself.
Our typical day starts about 7:30. I get up and order his breakfast so it's here within an hour. I get myself ready and then start waking Eli by 8 if he's not already awake. Speech therapy starts around 8:30 and there's a lot to do before we begin. We take off his nighttime splints, change a diaper, brush his teeth, get him transferred from the bed to his special chair on the couch (which is also my bed so my bedding has to be cleared off and his chair set up), and allow him time to just wake up. He has to be very alert before he's allowed to eat or drink so there's less risk of aspiration. Also during this time, nursing is in here to get is morning meds administered, take his vital signs and asses him, and the unit's nurse practitioner and/or doctors start stopping by to check on him. Sometimes the speech therapist is accompanied by PT or OT and they work together for a session. Usually it's just speech which is then followed by either PT or OT.
By then it's about 11am and that is the beginning of his downtime. He gets a tube feeding for two hours and has time to nap. He is taking food by mouth and doing well, but it's a lot of work for him. By giving him a feeding in the middle of the day, that saves him some energy and gets him nourishment to get through the afternoon sessions. Those start about 1:30 and it's usually a combination of PT and OT working together for an hour or so. Most days we finish up with another session of speech therapy. All that is typically over by 4pm. On weekends he still has therapy sessions but it is less
In total he usually gets 3-4 sessions a day for about four hours. His endurance has increased as well as his strength, but it is exhausting for him. After therapies are done, he's often hungry so we start an early supper/late lunch. He wants to ride in the halls in his chair, watch movies, and eat throughout the evening. If it sounds like he eats a lot, it's true, but remember that it takes a lot of energy for him to eat. It's a very slow process. We're just thankful that he has the drive to eat. Some don't after everything he's been through and that makes things a lot more difficult for those kids. With Eli we have to make sure he doesn't exhaust himself trying to eat!
Also throughout the day, we have to remember to give him breaks from his wrist splints, make nearly everything we do have some form of therapy within it, do stretches multiple times a day, and all that while still trying to makes plans for what he'll need once we go home. Home is still probably a while off. At this point we still don't know how long he'll be here, if he'll require an inpatient rehab facility, or if he can come home with intensive outpatient therapy. Our issue with outpatient therapy is that our insurance policy only covers 25 visits each of PT, OT, and speech therapy per year. That would be about six weeks of therapy at the rate Eli is currently using. A hospital social worker has been working very hard to find what programs are available to us. I'm also contacting people to inquire the same thing. It's a lot of paperwork and phone calls which are difficult to do with our daily schedules. Thank goodness for social workers! We'll see what comes about. I've got a few things to follow up on this week.
In addition to those tasks, Eli should be getting a wheelchair of his own on Monday. It will fit him better, thereby allowing him to use better posture, and most importantly be more comfortable. This is not a custom wheelchair because we don't anticipate he'll need it long term, but at least in the beginning he will. We're also in the process of getting insurance authorization (trying to!) for a special car seat and bath seat. We'll see how those go.
Over the weekend, we asked if Eli could leave the unit for our walks. He's allowed to go to the lobby for short periods. There's a fountain down there that always has holiday-appropriate ducks as decorations. It just so happened that Mamaw, Papaw and Zachary came to visit Saturday night. Bryan, Zachary and I left and got to spend time together while Eli hung out in his room with his grandparents. When we got back, I came up to the room and got Eli. We went to the lobby and for the first time in a month, the four of us were together again. It was amazing to sit on a couch and have one of my babies on each side of me. We exchanged Valentines Day cards and gifts. I was given a beautiful heart shaped locket from Origami Owl that Zachary designed. I was very surprised and pleased. Eli was obviously having fun and said Zachary could push him in his wheelchair (an honor he is very stingy to bestow on others). Zachary was very careful and even set the brakes without being told or shown how to. He did it perfectly. They played peek-a-boo, made silly faces, and just laughed together like brothers should be able to on a daily basis. It did both of them good as well as me and Bryan to see them.
Specific Prayer Requests:
- that Eli is allowed to stay here long enough to make progress with the therapists he is accustomed to
- that he makes progress in all areas (motor skills, speech, swallowing, strength, vision, etc)
- our care planning meeting on Wednesday is good and we can make some better plans for Eli's immediate future
- that Eli and Mommy get the rest they need to make each day count
- for the four of us as we endure more time apart and miss being a family in our home
- that we continue to focus on what Eli can do versus what he can't
Thank you all so much!