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Wednesday, May 8, 2013

The Doc's, part five

The day of the hospitalization I fought with Dr Tom on the phone. It was the most mad I had ever been. I SCREAMED at him! I swore at him and for the most part I don't swear. He took it, knowing I was hurting and needed to be mad at someone. I didn't want Teale to go to the psychiatric ward, I wanted him to fix her! He needed help in this. He needed people to observe her 24/7, so that they truly understood what she was going through. The day seizures were also God's way of making me let go. They were leverage the doctor's used as to why I HAD to do this. Her seizures are scary, they were bound to just get worse with this sleep deprivation. She could have one of her hour and a half seizures. She could have one the hospital couldn't stop or come out of one with more brain damage. Teale could even die from the seizures if we didn't get her sleep under control. This was the doctor's leverage and it was the argument that won. I had to help Teale and I had to help our family. I had to trust others to care for Teale, I just had to. Dr Tom and I still work together all these years later. He is one of my strongest supporters and advocates. We made it through my anger at him, but even today he still says he wasn't sure I would stick with him. I was so angry at him for not fixing Teale at home. Even today, Dr Tom can remember my anger vividly and talk to me about how he was scared we would never work through that. We did though, it took a long time for me to let it go, but Dr Tom was kind and patient and in the end I knew I had been wrong to blame him. I wasn't myself in those days of sleep deprivation, I was lost in my anger at the world and at God. Only Mark could bring me back. He was so caring and understanding. He prayed out loud every night as he held me tight. We would go to sleep knowing Teale was not going to wake us, but also worrying about her safety. Two weeks she stayed in the psychiatric ward. There was a routine we figured out to make it through that time. The psychiatric ward was our new norm. We would sit in a room with a big table, many doctors, a social worker, Mark and I, seated around it, staring at each other, asking questions and trying to trust. Many meetings were held to discuss options for care, a treatment plan was developed in those meetings. Dr Tom and Dr Dave were not there though. They were not part of this and that was tough. Lithium was suggested for Teale, it's an old school Bi Polar medication. Bi Polar was thought to be her issue, it's not a diagnosis handed out easily, especially to a child. It was difficult to hear that, it was a lifelong disease, a "forever sentence," if you will. The social worker handed us papers on Lithium and Bi Polar. The doctors explained their diagnosis and the reasoning on their choice of Lithium. Then there was the possible side effects. We were warned harshly of the dangers of dehydration on Lithium. If Teale were to become sick on this medication, if she were having diarrhea or vomiting, we would need to go to ER. Dehydration on Lithium could lead to death. It is not a medication commonly used on children. There are no studies on the long term side effects, it is risky, but what choice did we have? We could take her home and her seizures could kill her or we could try the Lithium and a stomach bug could kill her. Was life this complicated for other families? My heart hurt, I felt so conflicted. We took home the information on Lithium and talked to Dr Tom and Dr Dave. By morning we had decided there was no other option but to try it. It would be a slow increase, her blood draws would be even more frequent to monitor her levels in her blood stream. Lithium has a narrow "therapeutic" range, toxicity can also cause severe consequences, again death was being thrown at us. If Teale was on too high a dose for her body, she could become impaired or even die. Mark and I would need to pay careful attention to the symptoms of toxicity because if we missed the subtle ones at a low dose, it may be too difficult to get her blood level back down to a safe level. Her body had already shown us in the past it doesn't metabolize medications as expected. Her brain damage causes things to not necessarily work the same as "normal" people. Plus she was born with her intestine outside her body. The time her intestine spent in amniotic fluid caused damage and the intestine are in a random order inside Teale, not that perfect design God made in the rest of us. The doctor who did that surgery on Teale in the NICU had to just "push" her intestine and colon into Teale's stomach wall and close it back up. It would be impossible to make it into the design the rest of us have. So, in short, Teale does not absorb anything the same as you or I. Sometimes it takes a far greater amount of medication to help her, other times it is a far lesser amount. The Lithium would be started at a very conservative dose because of Teale's young age and her absorption challenges. I felt safer that the Lithium would be monitored in the hospital in those early days. If something went wrong, my Teale was with nursing staff 24/7. And so the long process of building up the Lithium in her bloodstream to a therapeutic level began. Again, Mark and I were full of fear and hope, that this could either hurt or help our daughter, there were no guarantees. Our faith would have to get us through....  (to be continued)

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