As you all know Ella was very sick and during our second trip to the ER her labs came back with very high liver numbers and so they transfered us to Johns Hopkins Hospital. Once there they spent most of the first day trying to draw blood from her to run tests. Her sugars were low and they gave her IV fluid with sugar in it to stabelize her. And her sugars were still only running in the low 60s while on that IV fluid. We met with the pediatric Gastro team and with the Endochronolgy team and the Genetisist. They saw enough evidence to determine that something is out of the ordinary and set things in motion to try and get a diagnoses. After many tests Endochrinology had deterimined that she has a growth hormone deficiency and they will start her on growth hormones in a few weeks. Her liver biopsy results have not come nack yet, but even by looking at the samples with out a microscope they see that it has a few characteristics that are out of the ordinary. She had and Echocardiangrahm and it reveild what is called Partial Anomalous Pulmonary Venous Return or PAPVR in this rare defect, one or more of the pulmonary veins carries blood from the lung to the right side of the heart, rather than to the left atrium (LA) as in the normal heart. Also she had a Brain MRI and it reveild that at some point she was deprived of oxygen (most likely in the final days I was pregnant with her or the first few hours of birth. It effected the lower part of her body like her legs and other motor skill areas which would explain why she has been slow to do everything. The reason for the MRI was to check the Pituitary Gland, but it was fine and they found this other instead. Then we were on to the liver biopsy which we are still awaiting the results for that. We were sent home on day 15 of her hospital stay and she is back to using her feeding pump full time again. They said that is the most reliable treatment right now to maintain her sugar levels until we get more answers from the pending tests. So yes, she is feeling better and we have come home. She is just as cute and as playful as ever. Thanks to all of those who kept her in our prayers. We love you and we will keep you posted.
As you all know Ella was very sick and during our second trip to the ER her labs came back with very high liver numbers and so they transfered us to Johns Hopkins Hospital. Once there they spent most of the first day trying to draw blood from her to run tests. Her sugars were low and they gave her IV fluid with sugar in it to stabelize her. And her sugars were still only running in the low 60s while on that IV fluid. We met with the pediatric Gastro team and with the Endochronolgy team and the Genetisist. They saw enough evidence to determine that something is out of the ordinary and set things in motion to try and get a diagnoses. After many tests Endochrinology had deterimined that she has a growth hormone deficiency and they will start her on growth hormones in a few weeks. Her liver biopsy results have not come nack yet, but even by looking at the samples with out a microscope they see that it has a few characteristics that are out of the ordinary. She had and Echocardiangrahm and it reveild what is called Partial Anomalous Pulmonary Venous Return or PAPVR in this rare defect, one or more of the pulmonary veins carries blood from the lung to the right side of the heart, rather than to the left atrium (LA) as in the normal heart. Also she had a Brain MRI and it reveild that at some point she was deprived of oxygen (most likely in the final days I was pregnant with her or the first few hours of birth. It effected the lower part of her body like her legs and other motor skill areas which would explain why she has been slow to do everything. The reason for the MRI was to check the Pituitary Gland, but it was fine and they found this other instead. Then we were on to the liver biopsy which we are still awaiting the results for that. We were sent home on day 15 of her hospital stay and she is back to using her feeding pump full time again. They said that is the most reliable treatment right now to maintain her sugar levels until we get more answers from the pending tests. So yes, she is feeling better and we have come home. She is just as cute and as playful as ever. Thanks to all of those who kept her in our prayers. We love you and we will keep you posted.
