In the Hospital

Yes...we are in the hospital tonight. This has been quite a day...let me start from the beginning. I called to schedule an appt with Dr Wood for this afternoon because Lydia still was not eating well. We saw Dr Hollman at 10:30...that visit was difficult. We talked a lot about hypotheticals for Lydia...about some of the patients she's seen with mitochondrial disorder, etc. She again emphasized that it is rare and very difficult to diagnose. She has only 3 patients with it right now...all ranging in age and severity. One little girl is walking and talking, but has lots of neurological problems...seizures, tremors, jerks. She said that one little girl is doing a lot better than she expected...(this is what really got to me)...she said, "She made it to age 5, and I didn't think that she would live that long." She said that she is not doing well, but her family loves her and is thrilled just that she is alive. She told me that some people live with mitochondrial disorders and some people don't. I'm having a really hard time with that...I pray for God to take those worries away from me...I'm not doing such a good job of handing them over myself. We also talked about the possibility that it could still be Rett syndrome...but she said that Lydia's condition did not present as the typical clinical presentation for Rett. Rett babies usually develop normally for the first six months...roll over, hold head up, sit...then they stop progressing, and their head circumference starts to drop (which Lydia's has...her head size is now below the 2nd percentile...off the chart) This is different than Lydia...which is not to say that it is definitely not that....and there's still the chance that the cause may just be that something didn't happen as it should in utero. The order of testing for us is: mitochondrial disorder (with drs in Atlanta)...if that is negative, blood test for Rett...if that is negative, we'll assume it was just a mishap in utero.

Elise's pyruvic acid came back normal, as well as the lactic acid...great. That rules out mitochondrial disease for her. We will find out about test results for MPS at the end of this week. Dr Hollman doubts that Elise has MPS...that is encouraging...but, we'll find out for sure soon.

I ask for your prayers for Dr Hollman today too. She told me during our visit that her dad was dying today. She said she decided to come to work because she needed to get her mind off of it. Please remember her in your prayers.

Then....we went to see Dr Wood at 2:00. I was able to show him a little discharge from Lydia's private area that I had mentioned to him last week. He decided to order a urine test...a catheter. He also ordered a chem 7 blood test to determine if Lydia was dehydrated. Urine test: Urinary tract infection...he listed all that the test showed...protein in urine, blood in urine, too many white cells to count, and on and on. Blood test: she was dehydrated...no surprise, she has not been eating. Her CO2 level was 17, and he said that if it were 18 he would have sent us home, so it was only borderline. Dr Hollman actually shed some light on Lydia's refusal to eat lately...I overlooked the obvious....coming off of the ACTH. Dr Hollman said that they see that a lot in babies when they stop the shots...she suspects that her eating will return to normal within about 2 weeks. Dr Wood thinks that the UTI may also be affecting her desire to eat. So the plan for this hospital stay: she is getting IV fluids to hydrate her and Rocephin to knock out the UTI. He said that he is willing to send her home tomorrow as long as she is eating better...so that will be the test. Special thanks to Brandi and Kristi for taking special care of us!! They came in to do Lydia's IV. And thanks to all who helped us today....it turned out to be a long day for everyone...Bridget, Aunt Leigh, Aunt Becky, mom...

Atlanta called today...they recieved the packet that we mailed yesterday...now they are waiting to get the medical records from Lydia's doctors so that Dr Schoffner can review her case. Then, the receptionist will call me to set up the appt.

I have a Tablet PC here at the hospital, so I will try to keep everyone updated. Right now, Lydia is snoozing peacefully! She is so beautiful!!!