Samantha's Diary

Samantha has been continuously having constant vomiting even after the last admission. For the past few days, we saw that she became lethargic with sunken eyes. She don’t even cry for feeds anymore, only cry when uncomfortable. She has very mild absorption of food that we feed her, even with breast milk.

Yesterday night, we made the choice to admit her again to hospital. This time, we’ve admitted her to KL General Hospital. She was immediately put on tube feeding and oxygen gas. 10ml on every feed with 5ml of water through the tube.

Doctors there are trained for metabolic disorder patients. Samantha will be reassessed again on her symptoms.

Her blood test result revealed that lactate acid value is 17 mmol/L. During her first admission, the value was 22 mmol/L. Second admission was 11 mmol/L. Normal human is  1–2 mmol/L.

We are asking for your prayers that Samantha’s lactate acid will be reduced and she will be able to regain her strength and appetite.  Thank you very much.

“Many thing about tomorrow I don’t seem to understand. But I know who holds the future and I know who holds my hand.”

Samantha will be discharging today. Doctor advice that due to Samantha’s special condition, she will need extra TLC at home. That would mean we are to not allow her to cry excessively, must pamper her, clean her when she soils as soon as possible, etc. Doctor has also reduces some of her vitamins temporarily.

In conclusion, her vomiting is caused by her stress due to high lactic acid in her blood.

Samantha’s vomiting has reduced tremendously thanks to the doctors’ help. The doctor has narrowed down the cause to her existing condition, which is high level of lactic acid in her blood. Normal human will have acid level of 2, while Samantha has level 11. According to doctor, this is common with Mitochondrial disorder patients and could be controlled via Sodium Bicarbonate.

As Jonathan had serious vomiting before and was diagnosed with Pyloric Stenosis, Samantha had higher risk of having it. They did an ultrasound on her abdomen again for Pyloric Stenosis. The scan came back negative and it also confirmed that there are no obstruction to her digestive systems, which also rules out GERD.

There is however a clearer picture of what we might face with Samantha in the future, but this may change as she grows. Through the MRI, the doctor informed that there are damages to the brain part which controls her motor skills. Her legs and arms movement may be affected. There is also some part of the brain damages which affects her learning skills. There is also visible larger than normal water volume in her brain.

The good news is, Samantha don’t have to undergo any surgery for now. The Hydrocephalus which was said could be threatening her life turns out to be her skull closure were slow due to her existing illness. It will close over time.

Another findings was her left kidney is no where to be found via the ultrasound. Doctor is to perform additional test to check whether was it because she was born with only one kidney or the kidney was damaged during her first incident. If the kidney was destroyed during first incident, and it is left in the body, it could be toxic and need to be removed via surgery.

Samantha is scheduled to discharge either this Friday or Saturday, and at most on Monday.

The last feed that went in without being vomited was approximately 36 hours ago. Sam has lost weight and is showing further signs of dehydration. We’ve consulted the doctor and he has asked to admit Sam tomorrow morning. We’ll be sending her to PCMC as Dr. Choy will be available there in the morning.

We’re hoping that this time, the doctor will be able to find what is and prescribe the proper medication. May God continue to guide each of us on what to do and continue to heal her.

Little one, how well you sleep,
Peace hugs us as we gaze at you,
Your occasional smiles lightens us,
As we know God walks with you.

Little one, the healing is in progress,
Take heed that we’re here for you,
A little bitter sweet the medicine maybe,
It is for you to grow strong and mighty.

Little one, keeps fighting on,
No other joy is greater than to see you grow,
Let not your body be your limit,
Let your will be the driver of your life.

Little one, mummy and daddy will always be here,
Keeping you comfortable at all time,
These hands will do whatever it takes to keep you going,
In God we have faith that He will carry you through.

Little one, be strong and get well soon.

A poem for our Little one,
Mummy and Daddy
3 June 2010