Friday, April 16, 2010

Blood Infection Clear!

This week has been particularly busy. Uneventful thankfully, constantly something going on. Elias! continues to do well while recovering from the staph blood infection. We actually finished the IV medication last night. We were scheduled to go in and have another culture drawn, but discussion this morning among several of Elias medical team had everyone leaning towards it not being  needed. We had a CBC blood count last Friday during IVIG that looked good, one sign that the infection was going away. We also had a culture drawn just before discharge from the hospital that came back negative early this week. That is a good indicator that things have cleared. Those factor plus we are set to follow-up with Dr Wood (pulmonary) early next week and IVIG at the end Elias will be checked over several times. We are comfortable with that as well. Elias has continued to feel great. He has been playing quite hard too, enjoying it as are we.

He has really been trying to stand-up on his own with a vengeance this week. We have been working on Cruising along furniture and getting from bench sit and sit to stand. He has continued working on the stairs, but he has to be in the right mood for that it seems. Earlier in the week we had our Aural Rehabilitation assessment. It was determined that Elias is certainly not hearing with the BAHA as we expect him to and with the developmental pediatricians evaluation his cognitivesmiles levels suggest that there is not any reason he should not be responding if this indeed was the proper amplification system. I’m sure Elias’ audiologist is not going to like seeing that report. As I said to Katharine, “ the cheese stands alone.” We have now sought 7 other opinions in response to the audiologist’s suggestions that Elias just doesn’t have the cognitive ability yet. Each of those disagree. So the ABR in June will be the deciding factor. At this point the best scenario would be for us to get a different result, more like what we got in Maryland, a mixed hearing loss/sensorial-neuro. If we achieve the same conductive hearing loss levels then there is another more complex problem that will need to be discovered. It is possible the hearing nerve is damaged, unformed, or defective. So we are back to the waiting game on this one. We learned yesterday that our night nurse, who we have only had for 2 weeks had to be terminated from the agency. They could not discuss the nature of the termination, but they did say it stemmed from a case he had worked in a neighboring state. To be fired from an agency takes some serious doing. Either gross negligence or an unthinkable not even worth mentioning. Hopefully, it was isolated and never affected Elias! Regardless he is no longer working with him. Of course they do not have a replacement or even a lead for replacements. So we are back to where we were with that. We have become accustom to this now so it really wasn’t a huge deal. Besides he was still borderline with us as he woke us up many times and just was not grasping the concept of Elias cares, which at night isn’t much.

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