Wednesday, June 22, 2011

Zahra and Nephrotic Syndrome - Day #2

First of all, thank you so much for your kind wishes and the prayers...insyaAllah..everything will be ok.

I don't have the emotional turmoil anymore..so don't worry, mommy is doing okay here. Trying my best here..

Anyway, am going to write the progress of Zahra with this disorder, just to share what's going on and keeping track of her record. The last urine test (yesterday) still showing the same amount (4+) even though the swollen face reduced a bit.

Below is the trail pictures of her on the second day confirmed with NS. We took second blood test and urine test that day to confirmed on the count of the protein leakage. The reading is remained the same, hence Dr Anushree starts the prescribtion straight away.


Zahra in the nursery room, while waiting for the urine test result.


At the cafe..still puffy. In fact he body is actually swollen but it's hard to see on a toddler because it always mistaken as chubbiness. But then I noticed, kalau tekan2 memang tegang, due to water retention.


Second time taking the blood


Where she cried her lung out, like usual. It's a painless procedure actually because the skin is numbed with the spray thingy but babies memang mcm ni, she doesn't like to be strained and she knows they are doing something to her hand. Kesian Zahra. Even at home, when she was on bed and saw her plastered hand, she cries while showing it to me :(

About Nephrotic Syndrome, they are a lot of other thing we should watch out too. First, the side effect from NS itself, Zahra will have high cholesterol. Well, it already shows in the blood test :( Her current reading is 10+, double up the maximum of 5 for kids. The tryglocerin (fats) also very high.. Nothing much we can do on the high cholesterol, but if it's too dangerous, she might have to take another medicine to reduce the risk of heart and blood vessel problems.

Side effect of the corticosteroids pulak, she will have high blood pressure and we have to control this, it has to be kept at 130/80 mmHg or below. So far the reading is okay as we only start the steroids for 3 days. Please please please no extra medication for Zahra...

Since this is long term and progressive disorder, I have to do daily urine test for Zahra. We already bought the kit..I'll share later. It's recommended to test on the first urine..but pagi tadi I tunggu Zahra kencing since 630AM til 9AM..still tak ada.. so have to miss the morning session :( Another thing about NS patient, they urinate less because the water went to the other part of the body. I have yet to perfecting my urine-collecting skill..


Sorry just want to post this..MrComot snap this pic for me. She was crying when they are poking her hand to take the blood and I was singing or something to calm her down. This pic somehow make me happy.. I don't know why.. maybe because I hold her tight, or just because.


Mommy just want to tell how much I love you baby. InsyaAllah you'll be ok..ok? Mommy and daddy will be by your side til the end.


14 comments:

  1. semoga semangat zahra tinggi! (aan n hubby jugak)....

    tak sbr nak baca lagi....

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  2. salam,

    all the best!!! cepat sembuh tau Zahra... miss u in indraloka alreasy...

    ambik darah ni, ikut org yg ambik tu jugak. so far sorang jer yg ambik darah sambil Ewan gelak-gelak. ada brother kat HUKM. His the best! Bless his soul.

    Anyway... cepat sembuh Zahra!!!

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  3. Mommy Fara,
    Up up high! Hehe..aminnn..

    Tatty,
    Ye ke? Terernya abang HUKM tu! Aminnn penyembuhan on the way :D

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  4. zahra, be strong sweetie. hope things get better. tak sanggup tgk budak kecik meraung.. n lalui semua ni.

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  5. assalamualaikum aan..

    Ada org kata, bila dah besar insya'allah anak kita akan sihat spt biasa. just that sbb depa kecik lagi, bila dah beso insya'allah buah pinggang akan ok.

    dugaan yer dik.. Anggaplah kita antara yg terpilih utk menerima ujian ALLAH. Our children is diri kita. Anak2 kecik semua ke syurga dik.

    Now anak akak dah 8 tahun. dah kurang relapse. this saturday nak kena pi spital sbb protein dah 4+. Adoi.. ada time tuh even relapse tp bila dah consume antibiotik, dia ok. So tak payah makan steroid. So nak tunggu doktor kata apa saturday nie. selalu bila dah besar, kadar prednisolone lg banyak. Menyebabkan anak kita lagi gemuk2. Adoi.. Skrang pun dah 32kg.

    Allah nak suruh dekatkan diri kepadaNYA. Kita berdoa banyak2 yer utk anak kita. Insya'allah.. semua akan OK. Allah sayang kita dik..

    Take care.. :)

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  6. Aan dearie, me baru baca tentang Zahra!

    Kasihan Zahra comel @_@

    I remembered the day my 4th nephew got NS, memang sangat kasihan dan dia tak boleh makan junkfood until he is 9 years old. The trips to the hospital was constant during his baby days.

    Now, he is 11, and so sihat like normal saja. So in the long run...nothing to worry kot. But I do pray she will get well soon!

    Me still nak giget pipi dia bila jumpa nanti.

    xoxo~

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  7. my pray is with u...
    *sebak sangat*

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  8. salam sis, saya rasa semua symptom yg sis ceritakan more or less sama mcm sakit buah pinggang. sebab makcik saya salah seorang pesakitnya. mungkin saya boleh kongsi salah satu langkah penjagaan. atas nasihat doktor, makcik saya tak boleh minum air banyak walaupun air kosong sebab water retention akan lebih teruk, memandangkan buah pinggang kurang berfungsi, tempat saluran air kencing pun sama, takut air tak dapat ke mana, ditambah dengan air lagi akan menjadikan bahagian2 badan makin membengkak. mungkin sis lebih tahu dari saya ataupun lebih baik refer Doc. I hope this helps and I pray for your child's speedy recovery.

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  9. Aan Andes, me the one yg email u regarding baby food (if u can recall). Me pray for Zahra speedy recovery. Sebak dada membaca, doa byk ya. Take care dear. Wslm

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  10. assalamualaikum
    pembaca setia blog ni and mmg in love dgn zahra..sgt kesian tapi she is a strong kid kan.=)

    ambik darah baby adalah perkara yg paling buat phlebotomist heartache, lagi2 masa baby nangis,tapi nak buat mcm mana, tu the only way nak dptkan sample..tgk pic tu dia guna butterfly needle,halus n the most painless needle..so,zahra xmau sedih2 ye,sedih tgk zahra sedih=(
    moga cepat pulih!Amin!=)

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  11. aan,

    i baru baca.sgt terkejut.
    semoga semuanya ok.zahra good girl..dia strong.trust me.
    u & hubby pun kena juga kuat.esp u..ada baby kt dlm.tk care.
    i doakan zahra cepat sehat.Insyaallah...

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  12. Thanks all..yup Zahra is a strong kid. InsyaAllah lepas ni dia baik for good, aminn aminnn... Thank youuuu for the prayers.. sayang korang >:D<

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