mitochondrial

Hospis Malaysia

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When Samantha was first admitted to GHKL due to her 2nd episode of vomiting and that was her 3rd admission since birth. That was when she started to feed via a feeding tube.  We were asked to purchase the feeding machine as both Darling and myself are working in private sector and we do not fall into the low income group. Otherwise we could request for a loan unit from the hospital. The cost of the feeding machine is about RM2k+ to RM4k+.

As we had spent quite a large sum during Samantha’s 1st and 2nd admission in Prince Court Medical Centre, we were quite reluctant to purchase the feeding machine and was requesting if the hospital can give us a loan unit. On the other hand, we were also thinking that Samantha only requires it for short term. We then appealed for a subsidy through GHKL’s Medical Social Work Dept.

While waiting for the appeal which will take quite some time, I then searched the internet for medical equipment suppliers if they have feeding machine on loan. At the end, Hospis Malaysia came into my mind. I called them and my inquiry was transferred to a pharmacist by the name of Aidah. Unfortunately they do not have any feeding machine or pediatric medical equipment.

About 1+ hour later, I received a call from Aidah. She brought me a good news.  She said she then remembered there was an unit of feeding machine at the store from a patient who had passed on. It is still quite new. She said I could loan it for free until if any of their patients needed it.

What surprises me the most was that, how on earth she got my number. I did not leave my contact no. but I did tell her that I have a baby who is admitted to GHKL and requires a feeding machine. She actually made the effort to call up the Pediatric Unit of GHKL and managed to get hold of my no.  So kind of her! God is great, isn’t it? Amen!

The feeding pump loaned from Hospis Malaysia with love

Two weeks after Samantha’s passing, I called up Aidah and informed her that I am returning the feeding machine. That was then Aidah got to know that Samantha had passed on.  We took the opportunity to give a token of appreciation to Hospis Malaysia.

One month later, neither did I expect, instead of receiving just the receipt, it was accompanied with a PERSONALISED letter of appreciation.

We were so touched with their thoughtfulness. They do not know Samantha nor seen her in person but through the letter, I can feel their compassion and care towards not just the patients but also their family.  Tears rolled down my eyes whenever I got to know there are kind souls who love our dear Samantha and care for us.

Goodbye Samantha…

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Indeed God loves her more than we do. Thank you all for your prayers.

She is now in God’s good hand. No more pain, no more fear but joy and peace of our Lord, Jesus Christ.

Will be bringing her back to Sitiawan tomorrow, to her Daddy and Mommy’s hometown, for burial.

Samantha…Daddy, Mommy & Jonathan kor-kor loves you. You will be missed dearly…

Prayer Request for Samantha

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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 are worsening and she doesn’t seems well clinically.

What’s Up with Samantha

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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.

Samantha is Back Home

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After spending 6 days in NICU, finally Samantha got the green light from the doctor to be discharged last Saturday. She looks chubby and rosier upon discharged because of the IV drips.  Hope she continues to be chubby and have rosy cheeks like Mommy.  Not only she managed to gain back the weight she lost but it increases a little to. She is now 3.2kg. She was 2.97kg upon admission. 

So what is the cause of her vomiting?  Like I mentioned in my earlier post, X-ray taken, ultrasound was done, MRI brain was done, blood and urine samples taken for tests.  Everything seems to be ok.  So the doctor concluded that her vomiting is due to her Mitochondrial Disorder.  People with Mitochondrial Disorder may have episodes of vomiting and migraine.  If this is the case, Samantha’s vomiting may relapse.  Nothing can be done to cure her vomiting. She may still vomit once a while but as long as she is not dehydrated or losing weight.  If the same vomiting relapses, the only thing that can make her better is the IV drips.  We hope there won’t be frequent visits/admission to the hospital.  All these while, her liver and kidney is not very good too. Do continue to uphold her in your prayer that she won’t have further illnesses.

Doctor adviced that due to Samantha’s special condition, she will need extra tender loving care at home. That would mean we are to not allow her to cry excessively, must pamper her, make her as comfortable as possible.  We suspected that her vomiting was also because she dislike taking some of the vitamins.  Because of this, doctor has reduces some of her vitamins temporarily so to not stress her too much.

Thank you all for your prayers.

Samantha is Admitted

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Since my last post about Samantha’s vomiting spell, her condition worsen where typically no food can stay in her stomach. She got thinner and lethargic. We brought her for a review yesterday and was prepared to get her admitted.  Good thing she vomited in front of the pediatrician and he could see how forceful is her vomiting. He straight away advise her to be admitted and to put on drips as she was also dehydrated. Once she is on drips, she looks better. Her skin colour improves and she doesn’t look so lethargic anymore.

However, doc still couldn’t find out what causes the vomiting. There are few causes that he is suspecting.

Pyloric Stenosis

As Jonathan had it before, Samantha had higher risk of having Pyloric Stenosis. 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.

Hydrocephalus (Water in Brain)

In my earlier post, I mentioned that doctor found water in her brain from an ultrasound.  It’s a condition called hydrocephalus. This can cause vomiting as well.  To confirm this, doc advised for a detailed MRI scan. The report came back negative. Basically, she does not have hydrocephalus. However the MRI report tells us something else which I will share later.

So the doc has ruled out the above two conditions. He almost come to a conclusion that her vomiting could be due to her acid level. Remember she was suffering from severe acidosis at birth which later confirms that she had mitochondrial disorder.  People with mitochondrial disorder may have episodes of vomiting, migraine and etc.  They took her blood and urine to test on possible infection also. Doc is now trying out medication and ways to prevent her from vomiting.