"The Rest of the Story"

As I was typing this the first time, I got a call back from Dr Guidroz, Dr Alberty came, and Lydia decided it was time to eat....yeah! She actually cried from hunger! She ate about 50 ml...less than 2 oz. Then we played together for a while...so much fun!! But, when mom started to demand a little too much, she shut down....she said, "Come on, Mom...I'm in the hospital for God's sake...with an IV and multiple blood sticks...I can take a rest from therapy for a little while." Okay, okay! :) Now she is playing with a toy that the ChildLife representative brought us.

One more thing from Dr Hollman....the reason that Lydia probably didn't run fever with the urinary tract infection to alarm us of it earlier is because ACTH also prevents the body from running fever...we already knew it was powerful stuff...golly gee!

Visit with Dr Alberty:
He listed the possibilites of things that could be the underlying cause(s) of her decline in eating...some short-term, some long-term. The ways to address it would depend on whether the cause is long term or short term. Short term possibilities: ACTH weaning, congestion, UTI, possibly reflux (though I doubt it right now)....long term possibility: an effect of the mitochondrial disorder (if in fact, there is one). Of course, the evaluation in Atlanta would help us to determine this more...but, that information is not available right now. So, the plan for now is to treat it as if it is short-term...these are his orders: Hep-lock the IV in hopes that the lack of fluid and glucose will cause her to be more hungry, and so eat more. We will see how she does for the next couple of days. If her appetite does not pick up by Saturday, he will order an NG tube (feeding tube) for the next 2-3 weeks. We will continue to feed her with a bottle or baby food at each feeding and then supplement with formula in the feeding tube to equal the typical amount for a feeding for a baby of her age and weight. If we see that in 2-3 weeks, after effects of ACTH, UTI, and congestion should be resolved, that she is still not eating adequately on her own, he will consider surgically inserting a Gastrostomy feeding tube (G-button) which is placed in the stomach. It is the more long-term option. If within those weeks, we have an evaluation from Dr Schoffner...that may shed more light and determine the next action too. Dr Alberty predicts that we'll be staying here through the weekend...then go home with or without a feeding tube depending upon what Lydia does in the next couple of days.

A visit from a local comedian:
I had a delightful visit from a coach at Martin's school yesterday, Tommy Douglas....quite a character. He was only here for about 10 minutes, but he kept me laughing for the rest of the night. Thanks Ace! He also brought quite a spread of stuffed animals for all three of our girls...Ms Hilda commented that it looked like Santa Claus had paid us a visit. Such a sweet gesture....it melted the hearts of all the women who have entered our room. Big sisters Audrey and Elise will be here this afternoon, and I know they will be thrilled to see their surprises!

To everyone who called me today....please understand that I am so grateful for you! Please don't get the wrong impression since I declined to tell you all of this over the phone....Jennie, Ms Hilda, Dad, Bridget....and everyone else. It gets hard on the brain to repeat so much info too many times. There's been so much today, that I'm bound to have forgotten something....I'll update again if I remember anything.

Please continue all prayers....we love you!!