Thursday, February 19, 2009

What song is Jere singing now?

No other name but the name of Jesus
No other name but the name of the Lord;
No other name but the name of Jesus
Is worthy of glory, and worthy of honour,
and worthy of power and all praise.


yes! thanks be to God He sent a wonderful helper, Gina who helps me with the house and the children and teaches Jere all these wonderful praise and worship :)

BLADDER WASHOUT

AGAIN!
The staff nurse just called to say jere needed another bladder washout coz his wbc was 30 and only then would they arrange his ultrasound and MCU

Does a wbc of 30 really warrant a bladder washout?????

I don't know why... but I just said NO.

Somehow, something in me questions... bladder washout no pressure? with the syringe pumping in the saline and drawing out the saline.

Somehow, I am a little sceptical about the whole management when I hear of this bladder washout thing.

The last I blogged about bladder washouts was some October. Last December, Jere came down with infection again. Jere went into hospital for a routine check which ended up with his urine having a high wbc again. That was a Thursday when we did a urine test. Then we were instructed to go to the hospital on Friday for a bladder washout and stay 3 hours and do another urine test. I felt that it was a little questionable as after a washout, i am sure the urine would be clear. NO? The attending dr insisted. I hung out in the hospital then returned to the children surgery centre again 3 hours later to catheter some urine for a retest. I asked the nurse as she was drawing out the urine whether would it be accurate, she then assured me yes. I then thought alright, maybe the medical professionals know their stuff. Jere had his urine drawn out and we went home. That very afternoon, they called us and said urine test cleared. We were so happy. Then the weekend passed. Monday, the hospital called and said "We sent the Thursday urine for culture and indeed there is an infection so please come and get the necessary medication and do some more bladder washouts. I thought it was so so strange. If they had wanted to treat Jere based on Thursday's urine, why should they bother to make us do another retest on Friday? Money is secondary, it was both stressful for Jere to stay so long in the hospital and also it was really draining for me too. What exactly were they thinking? Do they thiink through the process or they just give whatever orders that spins off their head? When I asked the nurse why had they make Jere do another urine test on Friday if they had wanted to base the treatment on Thursday urine test. The nurse kept quiet.

I really really can't understand the management of this whole thing at all.

Lord, make me a channel of your peace.
I'm tired. Lord, take over.

Make me a channel of your peace,
Where there is hatred, let me bring Your love,
Where there is injury, Your pardon Lord,
And where there's doubt, true faith in You

Oh Master, grant that I may never seek,
So much to be consoled as to console,
To be understood, as to understand,
To be loved, as to love with all my soul

Make me a channel of your peace,
Where there's despair in life let me bring hope,
Where there is darkness, let me bring light,
And where there's sadness, bring Your joy

Oh Master, grant that I may never seek,
So much to be consoled as to console,
To be understood, as to understand,
To be loved, as to love with all my soul

Make me a channel of your peace,
Where there's despair in life let me bring hope,
Where there is darkness, let me bring Your light,
And where there's sadness, bring Your joy

Oh Master, grant that I may never seek,
So much to be consoled as to console,
To be understood, as to understand,
To be loved, as to love with all my soul

Make me a channel of your peace,
For when we give, we will ourselves receive
It is in pardoning that we are pardoned
And in dying that we gain eternal life
And in dying that we gain eternal life

Wednesday, February 18, 2009

The Clean Intermittent Catheterisation (CIC) Training II

Today is Wednesday 18th February.

I thought long and hard.

Jere had physical program at Clouds of Praise today.

Should I go to the hospital for the CIC training?

I was really quite at a loss. To go or not to go?

Me to the helper: (sigh) Gina dear, should we go?

Gina: I don't know m'am, it's up to you.

Me: ok let's just get ready and see how.

We got ourselves ready and got out of the house.

At the train station, I was still quite reluctant to go.
Me: How? Gina, How?

I think only God has the answer for me. Yes, I know that and I haven't been reading His word enough that's why I am so lost.

Jeremiah, on the other hand was very very focused. Along the way, as we passed neighbours, not one but two, he had the same answer to the question. Everytime a neighbour asked, "Where are you going?",
he would very consistently reply," 我要常在基" ( I want to always remain in the Lord)which is his way of calling the Clouds of Praise coz the first thing he learnt there was "我要常在基督内喜乐因这喜乐是我的力量" (I want to always remain in the joy of the Lord for the joy of the Lord is my strength)

However, Jeremiah was a really good boy. When I asked him, can we go to the hospital first to take out your ssh sshh (urine)?
Jere replied, " Yes, coz i am a good boy. Not naughty boy."

We reached the hospital, this time, another staff nurse assisted us. She then asked Gina to try her hand at it. Gina seemed a little nervous but tried to do it. Jere was very cooperative. Gina washed her hands, prepared the cotton swaps with chlorehexidine (sp?) then our dear nurse said she wanted to send the urine for test. I found it rather strange that if she had wanted the urine for test, shouldn't the professional do the job in case we may not do it right and cause any contamination or do anything wrong? The staff nurse said never mind and my helper, Gina could do it and the urine collected can be sent for test. Gina carefully inserted the catheter. There was very little urine collected. Probably just a teaspoon. Then, when we thought it was done, and the catheter should be removed from the penis, the staff nurse suddenly took out her pen and wrote on the paper towel that Jere was lying on, telling us that if we started the CIC, we had to keep a chart and she started drawing a chart on the paper towel with me trying to keep Jere's hands off the catheter as he was trying to pull off the thing stuck in his penis. Finally, I couldn't take it anymore, I told the staff nurse,
"Can we not remove the catheter first before you start explaining whatever chart we have to keep and draw it on proper paper so we can keep and have a better understanding?"
Then it suddenly dawned upon the nurse that the catheter was still in the penis. *sigh* Did she not realise that there is something stuck to someone's private? I wonder.

Then, we were told to go to the counter to pay.The cost was $19.50. I enquired why so and the staff nurse then said $12.50 for the CIC and $7 for the urine test. I was a little baffled as I thought I was told that when we did it we won't be charged. I had to ask them to clarify and the staff nurse said,

"You used our facilities and supplies."

I really wasn't warned how much it was all gonna cost us when they were advising us to do the daily CIC thing. It's not so much of the cost of $12.50 but I really think that maybe I would feel more at peace not doing this catheter thing and giving the money as offering. Really, we should have been advised what were the costs involved especially so when I had said I liked the professionals i.e. the nurses to do the demo for 1 week and I would do it for another week before I start to do it myself at home. While we can still afford, that's fine but they said they will hold our hand till we are confident enough. Seriously, that did not sound like there was any costs involved or maybe I'm just too naive. Maybe they should have re phrase it to "We will hold your hand till you are confident enough but we will also charge accordingly." The dr even asked what was holding us back and if we needed a social worker to see us at a point when we were refusing to do the daily CIC.

Maybe a CIC support group should be formed and some nurse volunteer would help to do demo for free was my idea of holding hand. Instructing and advising the parents or caregivers along the way in terms of buying whatever supplies and as for facilities, how much of the water are we using to wash our hands? or how much more lights are we using or bed? This is what I call holding hands. This is a government hospital. A public hospital so to speak.

These people are not in the situation. They have healthy children. Do they really care about how much we are paying in our whole management of our special little one? Do they care about the costs that we incur all the time? Come on, where is the compassion here? I am sure with each CIC demo done by the nurses would not mean commission to the nurse and it does not mean that the bed or lights are not gonna be there if we were not there. Really, I just can't understand this whole thing. What's more we have been and still are a patient there and this is a public hospital. What send social worker to speak to us? You need not give us money by the hundreds or thousands but just a simple act of compassion, is it that difficult? Must everything be so bureaucratic?

Pray our good Lord leads and guides Jere's attending drs and nurses. Pray that our Lord lead me to make the right decisions for Jere. AMEN!

Monday, February 16, 2009

Healed!

Jeremiah's healed of his eczema! PRAISE GOD! THANK YOU LORD!

I will try to get the pics up of 6 months ago and now.

Lotsa people who've seen his skin at its worst was pleasantly surprised to see his skin nice and normal.

A friend even said "He does not look like he's got eczema!"

and Jere's eczema was not just serious, it was chronic back then.

JEREMIAH IS HEALED OF HIS ECZEMA! PRAISE GOD!感谢祖!

I am gonna give testimony this Saturday at Church of St Michael's healing mass. Got all the pictures ready to pass around, those of 6 months ago and all can see how his skin is healed and restored! AMEN! THANK YOU LORD! and guess what? it's the hubby that said... "YOU SHOULD GIVE TESTIMONY ABOUT THIS!" Jere's skin 6 months ago looks like it's been burnt. No kidding! Come right down to the healing mass and see and hear for yourself!

Thank You Lord
I come before you today
And there's just one thing that I want to say
Thank you lord
Thank you lord
For all you've given to me
For all the blessings that I cannot see
Thank you lord
Thank you lord

**With a grateful heart
With a song of praise
With an outstretch arm
I will bless your name
Thank you lord
I just wanna thank you lord
Thank you lord
I just wanna thank you lord
Thank you lord

For all you've done in my life
You took my darkness and gave me your light
Thank you lord
Thank you lord
You took my sin and my shame
You took my sickness and healed all my pain
Thank you lord
Thank you lord

Yes, Jere sings this song out loud with his hands outstretched and his eyes closed!

The Clean Intermittent Catheterisation Training

After much pressure from the doctors for some 2 and half years since Jeremiah's birth, I finally succumbed. I agreed to go for the training for this catheter thing.

However, I told the doctor that I will like to take it slow and at my pace. Dr and nurses all said no problem, anything for me. Yes, those were their exact words.
"No Problem Mummy. Anything for you mummy."
In fact they even said, "This is the best Chinese New Year gift for us!"
I was kinda miffed at what's the connection.
Nevertheless, I told them that I would like the nurses to do it once a day for one week and I like to see with the professionals doing it, were there any implications. Then I would do it the following week if I was comfortable with it. Then, if I was all ready to take it on my own then I would start it at home. The professionals agreed with the "No Problem Mummy. Anything for you mummy." one echoing another.

We set the date for the 10th of February, right after Chinese New Year as promised. I went to the hospital with Jeremiah and my helper, Gina who was all ready to see and learn. The staff nurse did the thing and asked us to return tomorrow. We were charged $12.50 for the thing. 11th February, we returned, the staff nurse said we should do it hands on. Then, I asked would I be charged $12.50 everyday like that, she then said if the nurses did it, we had to be charged. Okie. I wasn't told that. So it would be a good sixty over dollars if I had the nurses do it for one week. So I was ask to DIY. I was made to do it. Jeremiah's penis looked red and raw. I sounded my concern and the nurse said if it was a concern, the dr would prescribe some steroidal antibiotics cream to get the redness away. *sigh* We were told to return tomorrow and this time for the helper to try. I went home telling the hubby I was not comfortable about Jere's penis turning red and raw and Tim said something to the effect of not doing it if I was not at peace.

Somehow, the next day and after we did not return to the hospital. Was it the right thing or not? I don't know.

Yesterday, Monday, start of a new week, the nurse called again to ask why we did not return. On Thursday we did not return frankly was because Jere had a fall and was not in the best of moods. Friday, I just did not feel I was up to it.

Today, Tuesday, I asked Jere should we return, he said no. I asked the hubby should we return, he said let's pray about it and let the Holy Spirit guide us.

Please pray for our course of action.

Lord be my guide.

Confessions of the busy mama

I was knocked out of my sleep at 2.30am with the heat and just could not get back to sleep and was led here to blog my so long overdue post.

Pardon me if I do sound incoherent as it is now like 3am in the morning.

Frankly, I was drained. Overwhelmed. Caught up in my own world. So absorbed in my own challenges and trials that I forgot how much the good Lord has already done in our lives.

Guilt has also a part of knocking me out of sweet slumber as I know I had to do this.

I am feeling so guilty that I was knocked out of my sleep as I kept thinking how I had started this blog wanting to share my faith in Christ after the birth of Jeremiah and what we had and still going through with him but yet many a times I was almost unforgiving about how the drs had dealt with us till it came to a point that I stopped blogging. It's been like months since I did a proper post.

I forgot my first call to evangelize. I ignored the continuous nudges, the continuous prompting of the Holy Spirit. Really! There's so much noise in this world that God's soft prompting is sometimes so easily ignored.

Of course, God worked in His most amazing and wondrous ways. He called again, again and again. Finally, all I can say is "Here I am Lord. Send Me!"

The last nudge that hit me is from the earth angel Eunice and thank you Lord for sending her :)

Last week, after the Chinese New Year was over, I decided to take up the challenge of the 3-4 hourly catheter thing for Jeremiah. Frankly, I was still in much chaos in my heart about the decision. I went to the hospital and waited outside the treatment room at the Children's Surgery Centre waiting to be trained in the thing that I had dreaded so much. Maybe the people in the medical field would think cathetering a spina bifida kid every 3 to 4 hourly would have been the best option taken but to a normal mother like me, it pains me. Yes, it does. Imagine putting a catheter into the penis of a 2 and half year old every 3 to 4 hourly. In case, some of you still do not know what is a catheter, it's a fine tube being inserted through the penis, through the urethra into the urinary bladder to drain the urine. Why is it needed? According to the doctors professional point of view, this catheterization is useful when one is unable to fully empty the urinary bladder and Jeremiah is thought of this way by the doctors that he is unable to do so due to a supposed neurogenic bladder from his open neural tube defect. As I stood outside the room waiting, the mobile rang. It was from the social worker, Eunice of Club Rainbow. We had a short chat and she kinda lightened the mood before we entered the room. Eunice had wanted to meet up with us to give us some milk and diapers but I declined as Jere was allergic to cow's milk and as for his diapers, the little one had expensive bum since birth as we tried cheaper diaper alternatives from the pampers active and the little one had so bad diaper rash till his bum was raw. Then I passed the mobile to the little one to chat and thank Eunice for her kind thoughts.
Eunice: Jere, what do you like to drink?
Jere: (cheekily with a grin on his face) Milo and Coffee.
I was like what??? Jere, you don't drink coffee. Ok, the little one was trying to be a little cheeky. Jere laughed.
We hung up soon as we were next into the room but the coffee line certainly got us all laughing. After we were done that day and went to the pharmacy to get Jere's supply of antibiotics, Eunice called again to check where were we and guess what? The angel appeared with 2 big packs of diapers, a big tin of Milo, a book for Jeremiah and a catholic digest for me. I thought her thoughts and actions were the biggest! It was so sweet and it touched me so, telling me God is so with us on this journey. I was so not looking forward to this catheter training but the phone call itself so reminded me of God's presence and Eunice coming down with all the gifts was almost like an angel sent by Him to tell us He is with us throught it all. Especially with the digest. The digest was called "the WORD among us" has helped to wake me from my self absorption and shallowness. I had started this blog to proclaim His word, to glorify His name since Jere's birth but somehow at the end of last year, along the way I got absorbed into the noise of the world, I conveniently forgot to give glory to Him who has already done so much for us. I know there are many people we see everyday that need to hear us witness to our faith. I told myself then that i gonna revive my somehow dead blog with my very own experiences of the Lord and His working in my heart and mind. Indeed He works in His mysterious ways. How great is our God! When I shared this with Eunice, she told me that when she called me, she was actually prompted by a line she came across in Joyce Rupp's book which she was reading. She had cited Jeremiah 29:11. Praise God! He works in wondrous ways! and yes I always proclaim the promise that our good Lord has plans for us especially Jeremiah. Plans to prosper not to destroy. AMEN!

In the last few months of last year, I was caught up in bouts of infection of Jeremiah and all the procedures that followed till daddy Tim got a little tired over the whole thing of medical, medical and medical that he packed us all up in his biz trip to Macau. I was reluctant to spend the money, all around us rallied for the trip telling us it was time we take a good break and off we went. Thank you Lord for that good break as we ferried over to Hong Kong and the kids had a great time in Disneyland including me :P Yeah! more than 30 yrs on earth and it was my first to Disney :) and there is so much more to give thanks! I'll do this in another post.

Thank You Lord for bringing me back!