Friday, May 14, 2010


It has been an exhausting two weeks, with Elias birthday, family in town visiting, Elias having his episodes repeatedly and no nursing 12 out of the last 15 days. Fortunately, Elias has improved again and after a few days this week of being on the edge we are hoping the steroid meds he has been placed on is the reason. Next week we will be reporting to Elias pulmonologist and the decision will be made if the recurrence of these episodes so close are reason to postpone the upcoming pull-thru surgery. It doesn’t seem like there will be an issue, but it was said a few weeks ago Elias was clear as long as he did not act up. That surgery date is also the ABR hearing re-test.

With all the crazy wackiness the past few weeks we neglected to mention that Elias, Katharine and I had our HLA typing test done. We were told we would hear something soon about the results. The HLA type is one of the parameters for finding a proper match for bone marrow transplant. They will be able to let us know how easy or difficult it may be to find a donor when the time comes for Elias transplant. This does not mean that he is close to needing his BMT they just want to get his and our types so they can begin monitoring the registry when the time comes. We also saw Elias Bone Marrow Doctor, Dr. Mehta and we discussed going from every other week with the IVIG to every 3 and see how his levels do. She would still like to see them much higher than they are, but she did acknowledge that they were much improved from when we started. They just seem to be hovering at the moment, but she doesn’t want to increase the frequency. The infusion start to finish with all the pre-medications and assessments takes about 4 -4 1/2 hours. We were suppose to be doing them at home, if you remember, but our wonderful home health agency (the same agency that does the nursing) screwed that up to the point the doctors do not trust them with this anymore. We agree with the doctors by the way.

We are glad that Elias is no longer having the episodes and we hope these meds we mentioned earlier are doing the trick and will prevent them in the future. The fact that they come and go with little warning just adds a little more intensity in being prepared and aware. We just wish we could identify the cause and try to keep it from happening. Thank you all for the thoughts and prayers. Have a great weekend.

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