Samantha

On 4th Admission and Baby Teeth

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Yes, it’s Samantha. Admitted last Wednesday and was discharged on Monday.

We brought her for follow up on Wednesday but got held back because her lactate went up and her bi-carb (HCO3) was low which is not very good.  Doc wants to normalise her lactate and bicarb. Moreover, she had not been gaining weight.  We can sense that she’s not doing good from the way she behaves or reacts.  Whenever her lactate is high, she is more cranky, restless and breath harder.

Generally these are some of the things the doc will be looking at every time. Other than that are liver function, thyroid hormones and hematology.

Admit Discharge Reference Range
Lactate 15.7 mmol/L 9.6 mmol/L 0.2 – 2.2 mmol/L
pH 7.306 7.49 7.31 – 7.41
Bi-carb (HCO3) 9.5 mmol/L 19.5 mmol/L 18 – 23 mmol/L

So you can imagine the amount of blood drawn from her each time. I hate it when she needs to be admitted. They will come after her blood everyday. I now call them VAMPIRE.

She gained 200g in the hospital so now she is 3.8kg.  I guess I should not miss her night feeding.

On a happy note, both her lower central incisors has erupted.  That is fast! I am not expecting it because all her developments were delayed.  She’s going to be 6 months in another week’s time but she is still like a less-than-2 months old baby.

Say Hi to Samantha

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Let this be the first good post of Samantha.

She is now 5 months old based on her age. Physically she is like a 2 months old baby except that she is still quite floppy and unable to support her head yet.  Still wearing newborn sized diaper and clothing.

It has been a month since Samantha was discharged from GHKL.  She is tolerating milk via the feeding tube as mentioned in my earlier post.   I resumed breastfeeding so that my breast won’t be an alien to her and also to keep my BM supply going which has been decreasing.  We also offer her water through bottle to stimulate her sucking reflex and in case she is able to go back to bottle feed again. Her doctor disallow us to BF and bottle feed her as afraid that she may get choke but so far she has been taking it well. (Shhh…can’t let the doc know).

She gained some weight from 3.3kg to 3.65kg within a month.  Not much but this is consider a good progress despite her condition.  It will be a long way for her to catch up with babies of her age. She looks chubbier now. She can sleep better and for longer hours too nowadays. On and off, she still whine and cry unconsolably which could be due to colic, reflux or soiled diaper.

Talking about soiled diaper, Samantha is really a princess! She wants to be changed IMMEDIATELY once her diaper has soiled else she will not stop crying. Sometimes, she just want you to check on her diaper eventhough the diaper is not soiled.

Her big brother Jonathan adores her so much. He likes to kiss her, smell her, carry her, hold her hand and sleep beside her. He will take her hand to caress his face. And recently, I have no idea why he feels like biting her fist…love bite? 🙂

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.

The vomiting urge has subside

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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.

Samatha re-admitted

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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.

On Tuesday, 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 lactate acid is now at 17 mmol/L (normal human is 2 mmol/L).

On Wednesday, her feeding is controlled by a profuser machine which will evenly feed her 30ml of milk over a period of 3 hours. She stills vomits but hardly could notice milk stain now. She has also gained some weight from 2.9kg on admission to 3.15kg this morning.

Doctor is suggesting that Samantha to continue using the profuser until she gain enough weight.

Get well soon Samantha.

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.