Thursday, September 2, 2010

Update on Wyatt's metabolic disorder

Ethan called and talked to the geneticist this morning. We have been waiting for several weeks for the test results from the skin sample (Wyatt's foreskin) that they were using to do more extensive testing. The blood tests that they were doing were not giving them a clear answer. The man who made the test for the newborn screening said Wyatt does not have VLCAD. But they wanted to do more testing. The tests came back negative. Wyatt MIGHT be a carrier of VLCAD like Ethan and I are. But he does not seem to have the disorder. The doctors of course still won't give us an absolute. I personally don't think they want to admit they were wrong. Wyatt appears to be healthy and maybe the newborn screening test was to sensitive and needs to be adjusted. I would never want another family to go through what we have been through.

The good news is we have been given the ok to treat Wyatt like a normal baby. I no longer have to wake him up to eat ever 4 hours at night! They still don't want him to go longer then 8 hours with out feeding. I can't imagine him going that long during the day at this age. And 8 hours straight at night would be a blessing! I can't wait to let Wyatt sleep as long as he wants! I am sure I will be nervous tonight and maybe not sleep so great. I have no idea how long Wyatt will actually sleep. He is so used to getting up every 4 hours to eat he might wake up on his own out of habit. But I broke the eating every 2 hours habit. So hopefully he will eventually start sleeping longer now that I can let him sleep. I look forward to being more rested!

Another perk is we no longer have to test his glucose. We were not doing it often. Only if we were worried about him or if he accidentally went longer then 4 hours with out eating. His blood sugars have been great. So the doctor gave us the ok to stop completely. Of course if we are worried that Wyatt is showing signs of low glucose we can still test him. If for no other reason then to make us feel better. But we don't HAVE to anymore.

The geneticist told us we still should be careful if he gets sick. Illness can be a trigger that could cause him to have some kind of metabolic disorder flare up and get really sick. If Wyatt is not keeping anything down or has not been able to eat for more then 8 hours we are suppose to call his office. He would prefer we call him instead of our family med doctor because he obviously knows more about metabolic disorders. He will instruct us where to go and what to do to help Wyatt. But he wants the ER to be our absolute last resort for Wyatt. He admitted that the ER handled Wyatt's situation HORRIBLY and Pediatrics wasn't much better. The Dr. does not want us to end up in the same miserable situation. So if Wyatt is sick enough to contact a doctor he wants to be that doctor. He will be available to us at all times. I trust him when he says that because he was when Wyatt was in the hospital. He called every 2 hours from his home all night long. He fought for us to go home with Wyatt when the other doctors wanted to keep him jacked up on glucose water. It is nice to know that we have some one in our corner.

The geneticist said he is having a conference this afternoon. There will be a bunch of doctors from the Mayo Clinic there to discuss Wyatt. It is weird to think there is an entire conference happening today because of our little Wy Wy. I hope that our story can teach other doctors and help any family that might some day be in our position. Hopefully they will never have to go through the hell we went through.

Thank you to every one for your prayers and positive thoughts. They truly helped Wyatt and got us through a tough time. I reaffirmed two truths. The power of prayer and the power of mother's milk are amazing and healing! Thank you!

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