Tuesday, November 4, 2008

Today's events


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.

13 comments:

mollie on November 4, 2008 at 5:14 PM said...

Hey Amber-Thanks for the update, I have been thinking about you guys all day. Hope tomorrow goes well, we'll keep him(and you) in our prayers!

MJ on November 4, 2008 at 5:16 PM said...

HOORAY! Glad Mr. Nafey did well with his doctors appointment. We'll be praying tomorrow too, for surgery to go smoothly. Love you bunches!

Christy@MercyEveryMorning on November 4, 2008 at 6:51 PM said...

Amber, you're in my prayers. God is Faithful!

Angie Rodgers said...

Amber, thank you so much for updating!! I'm so glad that Nate handled everything so well--what an amazing little boy you have! My prayers continue to be with you!

Kelly Spezzano on November 4, 2008 at 8:33 PM said...

Prayers, Prayers and more Prayers are being sent your way! We love you all!

Laura on November 4, 2008 at 9:10 PM said...

Hey, Amber! We are praying for you and Nathan. I hope tomorrow goes well too! We are very close by, and if there is ANYTHING you need, please call. Our number is the same as it was in Macclenny...we've never gotten around to changing it. Really, anything! We're right around the corner! I should have offered sooner. I'm not online that much and didn't realize yall would be up this way. Let us know if we can help you at all.

Texas Mom on November 4, 2008 at 10:49 PM said...

Hi Amber, thank you for taking the time to update. Prayers will be said. I am so glad Nate had a good day today!

Dani on November 5, 2008 at 12:02 AM said...

Good news to hear. We will continue to be in prayer for him tomorrow as he goes through surgery, and then for a speedy recovery.

phaedra on November 5, 2008 at 2:30 AM said...

Praying for your family and little Nate, good luck with the surgery!

Anonymous said...

Thinking of you and little Nate and praying as hard as I can.
Linda

Anonymous said...

Nathan and all of your family are in my thoughts and prayers!

Amber Schmidt on November 5, 2008 at 11:26 AM said...

Many prayers said. I know that you guys are in the right place with Shoffner... hugs to you!

Candace on November 5, 2008 at 7:25 PM said...

I hate that I always seem to catch your updates after the fact, but I sincerely hope today went well. I admire your strength, Amber. We recently had a little scare with Max and something that might've been wrong with him and when I tried to keep from going to that "bad place" in my mind, I thought of you and all that you and Jay have been through with Nathan. You are an inspiration and an encouragement to me and so many others. Your children are so blessed to have you.

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