Samantha's Diary

We know many of you out there are constantly praying for Samantha. We appreciate that and may God bless you. Please continue to pray for Samantha that she may be able to pull through this time and get well eventually.

We admitted her to GHKL yesterday after noticing her breathing rapidly and lethargic. She was not her usual self and she looks weaker and not responding much. Her condition is not getting much better today. Her blood test results shows that she is worsening. Clinically, she’s not doing well too.

1. Pray that God will continue to strengthen Samantha to keep her going on.
2. Pray that God will provide wisdom to doctors treating Samantha
3. Pray that God will guide both Julie and myself (Kimmy) to make the right decisions for her.

God, we rest Samantha on your care. Your will be done. Amen.

All praises and glory be to God.

Today is the 13th day Samantha stays in the hospital. Her conditions are getting better with her urge to vomit stopped. The urge gradually lessen after blood transfusion were done on Wednesday and Thursday last week. This apparently helped to further reduce her lactate acid from 17 mmol/L to 10.1 mmol/L. That is great news for now.

She will still feel pain in the stomach and discomfort from time to time due to the acid level and air in the stomach. Sam is also very clever girl. Even if the medicine is fed via the feeding tube, she can still “feel” the medicine taste and would try to cough/vomit it out. Hopefully she will get over with it and take it willingly.

Doctor is now monitoring her progress and is expecting to discharge her by end of this week.

Julie and I are doing well. We’re blessed with Julie’s mom who is helping to take care during the day while we are at work.
Thanks to all of you for your concerns and prayers.

God is listening and answering our prayers. May all praises and glory be to our God.

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.