Tuesday, June 11, 2013

A kick in the pants... Our adoption story continued....

To follow our adoption story from the beginning, check out these links, in order:

Where we started
Starting the journey
A change in plans
He leads


Our investigation had gone well and we were awaiting a court date. John was doing really really well and seemed to be perfectly healthy. Joshua however, was another story.

He was sick.... all the time. He had been treated for malaria, but continued to do poorly. He wasn't eating much, was jaundiced (where his skin and whites of his eyes turn yellow), he cried all.the.time, ran consistent high temperatures, and had horrible constant diarrhea. The director of the home, who now had become a good friend, was truly worried about him and would often take him home with her at night out of concern for him and his well being.

We ended up having the hospital in Jinja (the city in Uganda where our baby home is) run a litany of tests on our little guy and found out he had sickle cell anemia. We were heart broken. Sickle cell is a huge deal... a disease that has to be dealt with day to day. It causes chronic pain that can at time exacerbate into what are called "crises" during which the pain is so severe that often times admission to the hospital is needed so that the pain can be managed with intravenous narcotic pain medications. The tiny little clots that are caused by the disease can also have a myriad of devastating and debilitating effects such as stroke, kidney impairment, cognitive impairment among other things.

Because of our jobs, Matthew and I were both very familiar with sickle cell disease and what it looks like on many different levels. Matthew works in an administrative role at Duke in Emergency Services. The Emergency Department sees a huge number of sickle cell patients on a regular basis and he has worked with the patients, the staff and even is on a committee that works to develop ways to better serve this patient population. I have worked as a bedside nurse both in Duke's Medical ICU and the ED. In the ED I have cared for these patients in pain crisis and in the MICU I have taken care of patients whose disease has been bad enough to warrant the need for various forms of life support.

Our baseline knowledge of sickle cell was somewhat empowering in the way that we were confident that we could care for Joshua well and knowing that he would get excellent care at Duke, but not at all comforting in having seen a small glimpse of what we were getting ourselves and our family into by adopting a child with such a significant diagnoses.

We never for a moment questioned going through with our adoption of these little guys. We had been open from the beginning to a "special needs" adoption. But knowing that the child whom you hope will someday be your son is on the other side of the globe from you, suffering... is pretty much torture.

With this information in hand, our attorney filed to the Ugandan courts to have our case expedited due to his medical fragility. There is a month long court-recess in Uganda in the summers and we were worried about not getting a date before the recess....

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