The newest issue for Elias has been the forming of a rash and irritation area around his colostomy, scrotum, and his left upper thigh. We are treating it with a concoction of powder, creams, and skin barrier. The doctors looked at it during his IVIG infusion. They feel as though this is an antibiotic induced problem. Which makes sense considering Elias just finished a course of vancomycin. While it is a very strong antibiotic he has never had this problem in the past. Elias has unfortunately been on courses of this medication, both oral and IV more than we can recall. The doctors did say that the more antibiotics in the system can create this issue. Even when he is not on the Vancomycin he is on another antibiotic for prophylaxis of Urinary tract infection, due to his kidney reflux. We will give the prescribed treatment over the weekend and reevaluate on Monday. We also did another culture to make sure the C-diff has cleared, at least for this time.
On the development front, Elias is pleasing his therapist with progress. Elias really enjoyed occupational therapy this week. She brought in about 30 tiny koosh balls, sat Elias in his snow disc and dumped them in with him. He had a blast kicking them and moving them around. He was laughing so hard while enjoying the sensory stimulation the activity was providing. His physical therapy this week went amazingly. We worked on a few exercises for Elias to work on that will hopefully help him manage his balance so that he can stand on his own and more importantly walk! With the design of these exercises he is actually for all intense purposes taking 2 to 4 steps on his own and the crashing or diving into the soft couch or mommy and daddy’s arms. Doing this for several weeks will hopefully give him the compensation skills he needs for balancing his body. His PT is pushing for us to have him walking on his own or at least with us only holding one hand by the end of September. That is very exciting! Of course, Elias is extremely motivated as he is constantly trying to stand and walk on his own. He has a blast with the exercise because we feel he is experiencing a taste of that independence even if for a brief moment and he wants more. Speech therapy is progressing, but there isn’t really much to report on and I don’t know why. It is going well just nothing ground breaking. His Aural Rehab Therapy is beginning to finally gain some momentum. Not in the sense that we are figuring things out, but more that Elias is trusting and engaging the therapist more. That will hopefully lead to more productive sessions. While her ultimate goal is to reward and influence response to auditory communication, at the moment she is accepting and acknowledging any form of communication response from him. This is expected to be a slow process.
To wrap this post up we were informed that our new day nurse is 4 months with baby. So the search is on for yet another new day nurse because it is a high risk pregnancy that requires frequent fetal monitoring. She will be with us until a replacement is found or her doctor puts her on bed rest. Unfortunately after my meeting with the agency they have it in their mind that they have until the baby is due, January, to replace her. I fear we are going to get stuck again either with no nurse or one that is unreliable. I will say that while that particular day had me pulling my hair out before the agency meeting, my day was brightened with laughter. Why you ask? Well it came up during one part of discussion how “cash strapped” the agency is. The budget is tight and the belt is tightening. My response of course was, “not staffing your cases and allowing at least one nurse to miss 50 shifts usually leads to lack of income.” The reason I found this so amusing was 6 months ago when I spoke with a very surly vice president I gave her some figures using our case. I shared with her how much money per week they were losing on our case alone, based on 2 days of unstaffed shifts, the weekends. It was somewhere close to $2,000+ per month, not to mention the other unstaffed shifts we had. She very quickly and curtly snapped back telling me how they had been doing this for 25 years and that they were in no danger of losing money, I could be assured of that. So you can see why I could only laugh when I was told about their budgetary woes. I guess the old saying is true. What goes around comes around!