My name is Diane and I am the mother of David, a new T-5 complete sci patient. We are in the learning stages of this journey and could use some encouragement and advice. David had severe injuries in addition to the sci which included a torn aorta, requiring a graft to be done and the fraft threw a clot down to his lower intestine killing off a large portion of it. That required doing a resection but thankfully there was enough to reconnect. He had surgery on the spine to do a fusion from the T-4 to the T-8. He had surgery for a torn rotator cuff as well. He was in shock trauma in Baltimore for 4 months and in rehab for 2 months. While in shock trauma he got pneumonia and some of the usual aquired bugs up there and also had pneumonia. All in all, my boy has overcome many things and thankfully he is a fighter. He also came home with 2 big pressure sores from shock trauma and one on the sacrum from the rehab. He has a wound vac on the 2 original sores and they are healing up nicely. However, the home care nurse recommended a donut for under the sacrum and it caused a huge bruise which has now opened into a sore. There is a lot of necrotic tissue that needs to come off so we can use the wound vac on it. The main problem is David has not been very mobile due to the pressure sores he had and it is hard for him to lay side to side because of the pain in the shoulder from the rotator cuff surgery. It seems like there is always a step back and I don't know what else to do for him to prevent these sores. They allowed him only 2 hours out of bed in rehab per day and that was for therapy. We are told he needs to get out of bed and to stay off his bottom and that is not easy to do. He has not been able to transfer himself yet due to the sores and no one tells me how to help him. He has in home pt and ot twice a week right now but he really wants to get moving and get back to life. He is so young and it kills me to see him like this. Any suggestions?
Thanks so much, DavesMom Diane