The Urologist Follow-up

Blogging about the post still disturbs me and hoping that after having done so would help me to let it go.

26th June, Thursday - Jere woke up as usual, I fed him his breakfast, bathed him and changed him. He was really thrilled that he was going to go out. I took him on the train to Novena and then switched to the shuttle bus. We reached the hospital at 1130am in time for our appointment. I knew it was gonna be a long wait and I had bought some nuggets and soya bean for Jere. We then chatted with an enrolled nurse who was doing some administrative work on her computer in an open room. We were in there till about 1pm when finally the nurse stood up and said she will check on when is it gonna be my turn. However, Jere was kept really happy in there chatting with the nurse, given stickers, papers and pens to doodle with the I did not even realise one and half hour had passed. The nurse then came back telling me we would be the next in line so we went outside the room that we were supposed to go to and sat right there. Another 10 min passed and then we were called.

Inside the room of the urologist...

Me: Hello Dr

Dr: Mummy.... You have to make the decision today! 2 options 1. CIC (Clean Intermittent Catheterisation) 2. Vesicostomy (whatever that is!)If you still choose to do neither. You don't need to see me anymore!

I was quite taken aback coz she did not even return my greeting and straightaway told me about how I had to make a decision there and then.

Dr (looking at how shocked I was, carried on): Yes! You gotta make a decision now. Now and NOW! If you still don't want to do anything, I don't want to see you any more!

I was like.... but Dr......

Dr: No! You must make a decision today and we will do it NOW!

Was it that life- threatening???? This really scared me for awhile

Me: No, Dr. I can't make the decision now.

Dr: You have to!

Me: But Dr....

Dr: No! You have to make your decision NOW! CIC or Vesicostomy!My staff nurses has told you how Jeremiah pee right????

Me: No.... Your staff told me that you will speak to me about it.

Dr: Ok the thing here is your son pees only under pressure. He does not sustain a pee properly. He only dribbles. You told us he can pee so we did the 3 hourly observation but you see ( turning to her case notes as if I understood the graphs and numerical values) he can't.

Me: (peering over the case notes, trying to make some sense out of it) what do you mean he can't? so what's the outcome of the observation?

Dr: He cannot pee... mummy.... you gotta start your cic or do the vesicostomy. You gotta make your decision now. Otherwise you don't need to come back. I don't want to see you anymore.

Me: But Dr... I gotta discuss this with my husband. My husband is not here with me today and what do you mean if I don't make my decision now, you don't want to see me anymore?

Dr: I've never managed a case like this where my patient refuse my way of management and if this is so, I don't want to see you anymore

Me: Isn't this a state hospital? A public hospital? If you don't see me, where do I go? Don't a patient have the right to choose their own course of action?

Dr: You know mummy.... you don't want your son to have renal failure and he won't be eligible for a transplant. (sounding a little exasperated)Well, if you don't do the CIC or the vesicostomy, he will. You must know what are the consequences of a neurogenic bladder.

Me: No! He's not gonna have renal failure.

Dr: You don't want him to turn around one day and hate you and blame you for what has happened to him. Really... you have to make your decision today otherwise you don't need to make any more appointment to see me.

Me: What do you mean by that Dr? I can't make a decision today.

Dr: I've given you 2 years!

Me: Yes Dr, but I just don't have the peace about it. Look... just look at our last Urodynamic studies....if you a professional, a consultant, a paediatric specialist, a urologist and your 2 staff nurses and me, a mother.... that makes the four of us, all specialist in our own ways, the way the catheter was being handled then traumatised Jeremiah so much, how do you expect me alone at home to do this? even with the help of a helper, I can't figure how much better can I get.

Dr: Yes. That is because you should have started when he was a baby and accepted the catheterisation as a way of life. Then he wouldn't put up such a struggle. You should have started then mummy. Don't worry. You will manage. We will train you to manage.

I was not convinced at all.

Dr: You know mummy, we can have a court order and in cases like this the parents can be over-ruled. This is neglect and abuse.

Me: No. Dr. I definitely did not neglect or abuse my son.

Dr: Yes. This is neglect and abuse! Taking care of your child does not just mean giving him food to eat and keeping him clean. This is neglect and abuse.

I was trying to keep my calm and looked at Jeremiah as he was getting a little disturbed by the whole atmosphere. Not that I was guilty of the accusation but I definitely did not neglect and abuse my child. If I were to be accused of neglect and abuse, I think I have to be accused of neglect and abuse of myself. All those close to me would definitely agree with me. I have given all I could to my dear son, Jeremiah. I never wanted him to be born this way. But, God definitely has plans for him. Jeremiah is to be exalted of the Lord.

Noticing that this is getting at me as I was keeping quiet this time,the dr continued: Look at his skin! This is neglect and abuse! Why are you not doing anything about the skin??? This is neglect and abuse!

Amidst all this, Jeremiah has sensed the hostility of the situation and started to say, " Out mummy out! I wanna go home!"

Me: No Dr. I have done something. This is not neglect and abuse. I have never neglected or abused my son. NEVER! (tears were welling up in my eyes)

Dr: Look at the skin! It's worst than the last time I saw it! This means he has got no feelings and the abrasion on the floor has caused his skin to peel like that!

Me: No Dr. This is eczema. Jere's got a serious case of eczema and this is already getting better. Last time it was weepy. At least this time it is dry. and yes I am doing something about it.

Dr: NO! LOOK AT THIS!!! ( pointing at the skin and drawing her nurses' attention) You know you can be sued for neglect and abuse?

Me: (my lips already trembling and tears rolling down) Dr, on one hand, I appreciate your professional advice, on the other, I certainly don't appreciate this harshness at all.

Jeremiah was looking at me now and he said: Mummy cry! Mummy cry! Outside! Outside! I wanna go outside! I wanna go home!

Dr: You gotta make a decision today! Either the CIC or the vesicostomy

Me: No Dr, You know I can't. I am not at peace with the CIC and I can't do the vesicostomy. It's irreversible.

Dr: No, it's not irreversible.

Me: Then what's that about?

Dr: It's punching a hole in the bladder and the urine will just flow out into the diaper. He's on diaper anyway so it's very easy management

Me: but the child will be weaned off the diaper one day.

Dr: Not the neurogenic bladder. You gotta decide. You have to do something or this is neglect and abuse.

Me: No Dr. I can't make the decision today. My husband is not here.

Dr: Ok I give you 2 weeks. 2 weeks time, your husband come with you and you make a decision by then. Otherwise I don't want to see you anymore.

Me: But Dr, can we decide on not doing any of these things and just keep monitoring?

Dr: No! Coz that means I have failed in my duty.

Me: No Dr, you have done your part in giving us the options. It's just us that do not want to take up the options and don't patients have the right to decide for themselves?

Dr: Yes. Patients have the right to decide for themselves but you don't want Jeremiah to hate you for making this decision for him right? He's not going to be eligible for a transplant. This is neglect and abuse. We can sue you for this.

I was having quite enough of the same point being repeated to me... what about being sued... neglect and abuse, not eligible for transplant.... renal failure....

Me: Ok Dr. 2 weeks we will come back. Now, can I go if there is nothing else? It's 2pm and my little one is hungry. He has not taken his lunch.

Dr: Ok. 2 weeks time I see you and your husband. Mummy you gotta make a decision. What's the problem here? You need to see the MSW ( Medical Social Worker)? What do you need? We will give you all the support. You must do something! You must do the CIC. Go and read up this 2 weeks about what's the consequences of a neurogenic bladder. Go read up about the vesicostomy and decide.

Me: What if I still decide not to do anything and just monitor? Are you not gonna see us anymore?

Dr: You write here on my case notes that you refuse all options given and sign against it.

Me: (in between sobs) so you will still see us?

Dr: Mummy, you must do the CIC or the vesicostomy. You must do something about his skin. This is neglect and abuse.

Me: Yes I have seen the dermatologist that you referred me to and he's given me nothing but steroids and antihistamines. Dr, I did not neglect or abuse my son.

I was just short of saying... DR STOP ABUSING ME VERBALLY!

I took my bag and decided I needed to go.

Me: Thank you Dr. I think I need to go.

I left the room with the THIS IS NEGLECT AND ABUSE ringing hard in my head.

Still in tears, I made my payment at the counter.

I walked out of the clinic feeling so terrible but reminding myself that I should not hold it to heart and forgive what the doctor had just said to me I told myself if Jesus was persecuted and crucified and still his words while on the cross, he could say, "Forgive them Father for they know not what they do." What I just got is nothing compared to what Jesus had suffered. I was certainly upsetted and affected by what the dr said. Angry? No. I know she's just trying to do her job but can these drs realise we mothers hurt the most when something happen to our child?

Father, help me to put this behind me and move on. Bless the doctors that Jeremiah see and let every word that proceeds from their mouth be a blessing not a curse. AMEN!

I Thank you, Lord,
for the trials that come my way.
In that way I can grow each day
as I let you lead,
And thank you, Lord,
for the patience those trials bring.
In that process of growing,
I can learn to care.

But it goes against the way
I am to put my human nature down
and let the Spirit take control of all I do.

'Cause when those trials come,
my human nature shouts the thing to do;
and God's soft prompting
can be easily ignored.


I thank you, Lord,
with each trial I feel inside,
that you're there to help,
lead and guide me away from wrong.
'Cause you promised, Lord,
that with every testing,
that your way of escaping is easier to bear.

But it goes against the way
I am to put my human nature down
and let the Spirit take control of all I do.

'Cause when those trials come,
my human nature shouts the thing to do;
and God's soft prompting
can be easily ignored.


I thank you, Lord,
for the victory that growing brings.
In surrender of everything
life is so worth while.
And I thank you, Lord,
that when everything's put in place,
out in front I can see your face,
and it's there you belong.