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ZX’s saga continues

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We still waiting? I've got a snack, it's all good.

The next morning, Zhi Xian slept soundly for nine hours, I managed to get him cleaned up, fed, and dressed on time to get to the hospital by 8:30am. We decided to go to the biggest hospital; the one with the best reputation, the place that we were sure could and would help us. Not so much. We went from clinic to clinic, doctor to doctor, (waiting in between of course) each one telling us we need to go somewhere else (usually to a place we had already been). Basically, no health professional was willing to take responsibility for care – we got the circular runaround, topped with a few snarky attitudes. My assistant broke into tears. After trying so hard, caring so much, this very young physician was faced with cold hard reality that people can be so cruel.  Even though this is an orphan with a disability and a serious disease – or perhaps because of the fact, people would rather not bother.

Exasperated, we headed to the fourth hospital in two days. Although we encountered the same system of waiting, we found hospital staff who were at least civil, if not kind. The junior doctors on the ward were kind and helpful, and I had access to the chief physician as well. We were given admission papers, but we still had to wait 5 hours for a bed. A Chinese colleague contacted a friend of hers (who also fosters a developmentally-challenged orphan) who would be willing to help (for a fee) stay with Zhi Xian during his hospital stay. She is an angel!

Up until now, through taking him home, the IVs, the toilet visits, I had become his caretaker, and so happy to be with him; but figuring out how to live in the hospital for a few days was something to which I wasn’t looking forward. I have to admit that I welcomed the relief that the Chinese ayi (and her friends) gave me. She knows the hospital routine, how to get stuff, she knows the Chinese way of course .

The next morning, when I went back to the hospital, Zhi Xian saw me and immediately looked away as if he didn’t want to see me. I had left him there and he didn’t like it and he let me know it. With some tickling and a couple mandarin oranges, he soon forgot his grudge and gave me only smiles. During my visit that morning, he got his bone marrow biopsy. While I wasn’t allowed to be present for the procedure, I was relieved to be there waiting for him to come back. He takes it all pretty well, but looks a bit bewildered about the whole situation. Poor guy!

From here, the plan for his care becomes a mess of communication, phone calls, hedging, guessing, optimizing and bargaining. Because he is an orphan, all hospital stays, medicines, and procedures must be approved by the orphanage. Because they are not paying for it, more care is likely to be approved, but not necessarily – as I’m about to find out.

After the biopsy, while waiting for the results (which could take days), I wanted to take him out of the hospital to avoid exposure to bad germs. No one is willing to transfuse him with blood or platelets (I guess one has to be nearly dead before they’ll do that), and there is no other treatment at the moment (unless you count the IV vitamin C), so why not go to someone’s home and rest? No can do. Either he stays in the hospital to wait on the results or gets discharged to the orphanage. I vote for hospital, where he can be watched and cared for more carefully.

The following day (Friday) was an all-day working retreat for our faculty. Late in the afternoon I got a call from my assistant that the biopsy results came back “consistent with aplastic anemia” and his hemoglobin level had dropped another couple of points to 6.3. I, along with my Chinese colleague, tried calling the chief doctor to get their treatment plan. No answer.  It is the weekend – we need their plan to make our plan to inform the orphanage for their approval. We just may be able to get him to a home – even if only for a few days! No answer, no answer. The two of us leave the faculty meeting a bit early to have a look at the biopsy results ourselves, to try to sort this out with the junior doctor, and perhaps get in touch with the chief doctor.

Several hours later, the biopsy report cannot be found, the chief isn’t answering his phone, and the welfare institute tells us we are wasting our time and money on this kid. Thank you for getting a diagnosis for him, but they’ll take it from here. Fortunately, they don’t want him back from the hospital right away as they would still want to hear the plan from the chief doctor. So the guy gets another night in the hospital.

Saturday morning, we finally get a meeting with the chief as he does his rounds. He suggests another bone marrow biopsy from another site on Monday to absolutely confirm the diagnosis, and then start immuno-suppressive therapy for the aplastic anemia, but using drugs that I’m not familiar with nor am I comfortable with using them on in an unsupervised environment. My opinion ends up being moot because the orphanage balks at this plan and wants him back. Because it is the weekend and it is not a convenient time, we can have him until Monday. In a real home for the weekend!

Zhi Xian and I in the hospital

Instead of my house, however, he went to the home of a dear family with other children who can help play and care for him, and who would foster him in a heartbeat. They will care for him until Monday when my team will return him to the orphanage. When I went to visit on Sunday he seemed to be having a blast messing up their house, and the family was loving it! I won’t be taking him back to the orphanage, though. He continues to hang his head and look away when he sees me putting on my coat to leave, and he still gives me a hard time when I return. I don’t want to insult him or be party to turning him back to the institution.

He is not a candidate for long-term foster care, according to the official, because of his risk for bleeding. I won’t go into their reasons (bogus, in my opinion), or point out other children with blood disorders who have suffered under their “watchful” care. It is unlikely we’ll find the root cause of his disease, and it unlikely that he’ll get treatment for it. Moreover, Zhi Xian won’t be going back to his foster home in the village, and he won’t be allowed to be cared for by a family here in town.

Experiences like this bond me in a way with the Chinese people. I am always aware of injustices here, and regularly care and advocate for orphans and other patients. But this guy invaded my heart and it became a much more personal fight. This is not the outcome for which I was hoping, and I’m frustrated and sad, but it isn’t over yet. Minds and hearts can change, and we can always pray and hope for his healing and his well-being. I’ll still be able to see him and check up on him on my visits to the institution. Who knows? Perhaps we’ll be able to get him out yet.

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3 thoughts on “ZX’s saga continues

  1. Katherine, what a saga the story of advocating for good hospital care for this boy! Thanks for sharing with us and for empathizing with the Chinese orphans…. Does he have Down’s Syndrome? Is there an international Down’s Syndrome organization that could help him? Is this a naive question?

  2. Katherine,

    I found your blog in a round about way and have an interest in China, having traveled there ten times in the last few years. Where are you? I would love to know more about your work. I am on staff at Santiam Christian School in Corvallis, Oregon.

  3. Pingback: ZX and JB updates! « A Just Walk (run, hike, etc…)

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