Samantha is back home from hospital last Thursday after her readmission for 16 days. We hope the hospital won’t be our second home. It’s quite scary in the hospital as you would see all kinds of patients with some having metabolic disorder like Samantha. The first thing that came to mind is will Samantha be like them? If you know the prognosis of her medical condition, you’ll have the same fear as we do.
In summary, Samantha is suffering from a disorder called Mitochondrial Disease which also caused her lactate acid and PH to be very high. You can read more here as it’s too scientific for me to explained. This disorder has affected her kidney, liver and brain at this juncture.
Initial abdominal ultrasound could not locate her left kidney and so they suspected that she has only one kidney but latter ultrasound managed to located her left kidney but it is very small. Since her renal profile are quite normal, they will perform a functional test later on her.
Her liver is enlarged. Current size is about 5cm compare to normal size which is about 2cm. The doctor are still monitoring her liver for any liver impairment for liver failure.
We had the MRI brain scan done for Samantha and the result shows that the part of her brain that controls her motor skills are badly affected. Her eye may be affected as well as the brain controls the eye vision, movement and coordination.
Samantha has to go home with a nasogastric (Ryles) feeding tube. Not what we expected but at this moment, we can see this is the best for her. Most importantly, it can help to reduce her vomiting as tube feeding is a gentle way of feeding. She doesn’t have to use much energy as compare to sucking from the bottle because the milk and medicine/vitamin enters her stomach directly. Tube feeding is common for children with failure to thrive.
Administering medication to her is much easier now as she doesn’t have to get agitated with the horrible taste. Feeding through the Ryles tube requires a feeding infusion pump that controls the delivery rate of the milk (75ml in 3 hours). This will restrict her mobility as she has to be hooked to the feeding pump for at least 3 hours. Another way is to use a Bolus (a type of syringe) but the flow of the milk is faster.
When we looked at other parents with their normal child, we are challenged mentally and emotionally. However, after all these, we are still glad and thankful. 🙂 We are unable to forsee the future and what is the life span for Samantha. What we could do now is to look upon God for His healing powers. Take things one step at a time and appreciate the moments that we can have with Samantha without neglecting Jonathan.
p/s: To all the mommy bloggers, sorry for not visiting your blog as often as I used to be. Will do that once things are sorted out.