I'm Elizabeth DeHority, usually blogging at http://keeponspinning.wordpress.com , here at Adeye's request to fill you in on the past 24 hours with sweet little Hasya. Adeye doesn't have her computer with her at the hospital and asked that I write and fill you in, she says her inbox is flooded and she just can't do anything about it at the moment.
Hasya weighed 22 pounds at her medical appointment in her country to be able to come home. She is 15 years old. But size isn't her only issue. She suffers from severe contractures, with joints and tendons that have been unmoved for so long that they are permanently fused. She has terrible spasms and tremors and is in constant pain. Her mouth was an infected mess. Adeye was well prepared for all of this, and was able to maintain things until the exceptionally difficult trip home. Flight delays and the extreme pain that Hasya suffered because of positioning to be on the airplane were the last straws. She then was unable to eat or drink, and became profoundly weak and lethargic.
Adeye did everything she possibly could at home, following her doctor's instructions, but as Hasya got sicker, it became obvious that she needed more medical attention. So they took her to a specialty children's hospital about an hour from their home last night. Unfortunately, at that hospital they took minimal care of her, gave her 500 ml of IV fluids, and told Adeye to just take her home and try syringe feeding her (which of course she'd been doing since they picked her up)
Fast forward to this morning... it was obvious that the situation was deteriorating fast. Adeye called their regular family doctor, who agreed that she certainly needed to be admitted to the hospital NOW. So we evaluated as many factors as possible to make sure the journey would be safe, and then brave Adeye set off alone with Hasya on the 2.5 hour journey to Children's Hospital in Denver, CO. They were amazing. They rushed right to her when she entered the door, and a doctor was at bedside within a minute. They are evaluating EVERYTHING and being so careful and thorough.
When she arrived, she was profoundly lethargic, and didn't even respond when they started the IV. Her blood pressure was very low, and her labs showed her blood sodium to be very high and her glucose to be low. She even had a fever, which led them to worry about sepsis for a while, but it turns out that was perhaps just from dehydration, too.
So today they have been carefully rehydrating her though the IV. It's important that they not correct things too fast, Hasya would not be able to tolerate that additional risk and stress. For example, her blood calcium is very low, but treating that can be quite tricky and requires very close monitoring, so they are saving that for daytime tomorrow. The other main issues for tomorrow are to begin work with a pediatric nutrition specialist, to make a plan for getting her the best possibly nutrition, probably though an NG tube for a while, so that she can heal and grow. They are taking her pain from her contractures VERY seriously, and the orthopedic surgeons are involved and are being very compassionate. They want her to be comfortable, for the first time in her entire life.
They are also going to look at things like GI function, reflux, scoliosis, her dental mess, osteoporosis, check her heart, etc... Adeye and Hasya might be there for a while, but by the time they leave, all these issues will be addressed and plans put into place.
Adeye is ever so grateful for your prayers and offers of help. She is connecting with one mom tomorrow who lives near the hospital. As she thinks of anything else she could possibly need, she will let me know and I'll put it on facebook. Meanwhile, just the prayers, prayers, prayers. Thanks so much.