What’s Up with Samantha

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.

This entry was posted on Sunday, July 18th, 2010 at 4:41 pm and is filed under Family News, Motivation, Samantha. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.

17 Comments

  1. Ann says:

    Julie….please don’t even consider our feelings with regard to blogs! My heart goes out to you and Samantha and your family.

    All of you are a great testimony of strength and faith in God. I pray you will continue to draw from Him, who is able to meet all our needs.

    My family and I will conitnue to pray for little Samantha. God bless you and take care.

    ... on July July 18th, 2010
  2. woei says:

    Hey sis,
    just watched a movie yesterday. I watched it 4 times already. It was documented 10 years ago. The guy who was born with illness and finally die of HIV. During their time the blood was not checked against HIV. He said that when we asked for miracle-healing is what we usually expected. However, he said, perhaps it is not about that rather about him experiencing his life and sharing it with others…

    ... on July July 18th, 2010
  3. MieVee @ MummysReviews.com says:

    Thank you very much for sharing your journey and letting us learn to cherish every person around us. Remember to take good care of yourself first so that you can take good care of your family.

    ... on July July 19th, 2010
  4. Mery says:

    Glad that Samantha is back home and hope she will have a speedy recovery.
    Takecare !!!

    ... on July July 19th, 2010
  5. rachel says:

    Thanks for updating. We wanted to visit earlier, but I guess you may be occupied with Sam’s stuff. God has a plan for everyone, including Sam. I’m sure Sam is safe in God’s hand and we continue to pray for God”s purpose to unfold. Julie, you are very strong and continue to stay strong. Love, Rachel & Philip.

    ... on July July 19th, 2010
  6. andrewjune says:

    dont you worry about blogging, julie…
    still keeping lil sam in prayers…
    tcare!

    ... on July July 19th, 2010
  7. agnes says:

    please stay strong and will continue to pray for baby Sam definately…

    ... on July July 19th, 2010
  8. chanelwong says:

    Please take care of yourself…Pray for Samantha..
    Don’t worry about our blogs…

    ... on July July 19th, 2010
  9. Amand Liew says:

    Kimmy, I’m encouraged by your testimony. We may not know what God has in mind but we surely know that whatever God allow us to go through, he meant it good for us. Rom 8:8 and the challenge is within what we can bear. I look at Job in the bible, a blameless man yet he went through many challenges in life but he passed his “test” and God bless him with even better things. All we need to do is to walk right with God and do according to His will. May your testimony bring many glory to God and may the life of Samantha will bring many to know God’s love.
    I will continue to pray for your family.

    ... on July July 20th, 2010
  10. Dora says:

    I bumped into your blog… and I hope little Samantha will be alright. Keep her into my prayers 🙂 take care!

    ... on July July 20th, 2010
  11. Faye says:

    Hi Julie,

    I’m a silent follower of your blog.

    I know how you feel.

    I’d like to offer my help, should you need breastmilk for Samantha, feel free to contact me. I’m a breastfeeding mum.

    ... on July July 21st, 2010
  12. mc says:

    my heart goes out to all of you. please take care and stay strong.

    ... on July July 21st, 2010
  13. Charmaine says:

    Sending prayers heavenwards to look after all of you, esp. Baby Shepherd. May the Good Shepherd protect you and lead you to green pastures.

    ... on July July 21st, 2010
  14. Cynthia says:

    no worries on not reading blogs, take good care of lil samantha n urself. May your family able to pull thru this together and with God’s help and comfort. Will continue to pray for your family. God Bless.

    ... on July July 22nd, 2010
  15. KittyCat says:

    Julie – In times like this, I love to visualise that beautiful pencil sketches of Jesus and the little children surrounding him.

    You might also like to sing this cute children’s song to Sam (my son learnt it at kindy):

    “Jesus loves me, this I know. For the Bible tells me so…”

    He forgot the rest of the lines! 😀

    Do take up Faye’s offer – breastmilk works wonders. I’ve seen it myself. Take care ya.

    ... on July July 24th, 2010
  16. debbie says:

    Please don’t bother about the blog hopping, we all understand. And to continue stay strong as you are… everyone here is ready to help… do let’s know!!

    ... on July July 27th, 2010
  17. Samantha's Diary » Blog Archive » Say Hi to Samantha says:

    […] 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 […]

    ... on July September 12th, 2010

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