I want to thank you all so much for your thoughts and prayers for us today and tomorrow. The Lord has heard them and has blessed us exponentially already. Nathan was so great today. He slept for about an hour at Dr. Shoffner's office and has just been happy and friendly all day. And today's events were not nearly as stressful or strenuous as we thought they would be. It has been a wonderful day.
Nathan had a resting metabolic rate test and another EKG done this morning. The EKG looked good other than his heart rate being a little higher than normal (no surprise there), and they will give Dr. Shoffner the results from the RMR tomorrow.
We met with Dr. Shoffner after that and just really enjoyed this visit. He had spent quite a bit time looking over Nathan's records, and this was evident in his knowledge about Nate. It was very interesting to get his view on everything. Dr. Shoffner was mostly concerned with the fact that Nathan goes through these weak cycles where he is lower-toned and weaker than usual and that he has hepatic dysfunction (liver dysfunction). Nathan's abnormal AST, LDH, and AFP levels along with the fact that he had prolonged jaundice for the first 2 months of his life are evidence that he has had hepatic dysfunction since birth. This and his "cycles" are the most concerning symptoms at this time in Dr. Shoffner's eyes. Everything else (GI issues, Immuno issues, etc) are all just milder symptoms of whatever else is going on with Nathan.
Dr. Shoffner also confirmed that Nathan does indeed have autonomic dysfunction. The autonomic nervous system controls things your body does involuntarily...heart rate, digestion, temperature regulation, and respiratory rate. I have recently thought that his issues with tachypnea, tachycardia and temperature problems were related to dysautonomia, and Dr. Shoffner confirmed that suspicion today. This autonomic dysfunction does seem to be just another symptom of whatever else is going on with him.
Tomorrow, we are to be at the hospital at 7:45am. There is a slight possibility that we would have to be there earlier so Nathan can have another echo done if they can't find the one he had done when he was 2 weeks old. With his chronic tachypnea, they HAVE to make sure that his heart is strong enough for the surgery, and I am glad they are taking these precautions.
During surgery, they will take blood for testing, muscle and skin from his thigh, and spinal fluid for testing of neurotransmitters and other labs. He will be under general anesthesia, and the surgery will take about an hour. Dr. Shoffner's lab will automatically take the samples and start testing for numerous disorders and diseases affecting metabolism. He said that we should see some results in 6-8 weeks, though it could take as long as 12 weeks...that is definitely a lot sooner than we were originally told.
We are thankful for today. It has been a great day of information. Everyone has been professional and kind, and I am just a wee bit jealous of the incredible set-up they have at Scottish Rite CHOA. I just hope that the plans for our city to have a free-standing Children's hospital in the future do not fall through. Meeting with Dr. Shoffner was such a wonderful privilege, and it was great to hear him say that while Nathan is not severely affected currently, we definitely need to find out what is wrong with him for appropriate treatment, precautions, and genetic involvement for our children as they grow older.
Again, thank you for your prayers. I believe they have been heard and answered.