Testing 123
Today was our second visit to the Children's Hospital. Sienna was such a good sport as she completed another sweat test, had chest X-rays taken and had 3 vials of blood drawn. She was giving everyone in the diagnostic center baby fever! Our lab technician kept telling us she couldn't have Cystic Fibrosis as her cheeks were too chunky for a CF baby.
We should find out the results of the sweat test tomorrow. While we are hopeful for lower sweat chloride levels, we know its unlikely to go from a positive test result to a negative one. This sweat test will just further confirm her diagnosis.
The chest X-rays will ensure her lungs are in good shape. She will need chest X-rays annually to monitor her lung health.
The blood drawn will be used to check her vitamin levels and will also be sent away for genetic sequencing. We currently give Si vitamin D drops daily, but she may need additional supplements if her body is not absorbing enough nutrients. It can take up to two months to get the results on her genetic sequencing, but this will tell us what her second gene mutation is. It will be a waiting game until then.
For now, we just monitor her to ensure she doesn't get sick. Our next clinic appointment isn't for another two weeks. We will find out then if she needs to go on enzymes based on the results of her elastase test. We already know there is an increased level of fat in her bowel, but since she is putting on weight, her Pulmonologist and Nutritionist are not concerned with that at the moment. Hoping her Pancreas is functioning properly and no enzymes are needed!
I am sure this was an exhausting day for all. Thank you for sharing and helping us all learn. Sleep well. Hugs and kisses
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