Another long one; filled with more drama and some pain...

This is going to be another long post filled up with many of my disorganized train of thoughts...

Drama Continues...

Monday's Bone Scan~~~
Let me just start by sharing more of the inherent flaws in our medical system. If you recall, I ended my last post just before going to KKH for Charmaine's bone scan. By the way, Charmaine did it! She completed her bone scan wide awake without any sedation, smiling, giggling and saying that it takes too long.

Mid-way through her scan, a SSN from the MRI dept walked in to talk to me. There I was, talking to Char, trying to keep her calm and still, while more than half my mind was anxious, paranoid and just terrified. My sight was on the computer screen, trying to read the scan and praying desperately not to see anything that shouldn't appear on the body. And than in walked the nurse. She started asking me the routine questions for the upcoming MRI scan on thurs. Than, just like what my instincts felt, she went on to mention abt the plug. She said that I have to get SGH to remove her plug on Tuesday after the isotope injection.

I honestly wasn't sure how did I keep my cool and replied her firmly "NO". I went on explaining all the other procedures we have for the rest of week, while glancing at Charmaine from time to time, making sure she was okay. I wasn't expecting her to give me a break and sure enough, she didn't. She went on to say that, "the plug shouldn't be kept for more than 2 days, being higher risk of infection and risk of needle being dislodged."

Sigh. My emotions were running higher but I continued to explain that we are seasoned. Charmaine has gone back numerous times with a plug and that we all know how to handle the situation. But in my head, I was dying to scream out at her comments: "Pls don't try to bullshit me. (pls pardon my French) I've lived in a hospital longer than you probably have. Everyone has their plug left in their hands for days without ever having to change the plug for up to a week! Who are you trying to bluff saying that the plug should be removed within 2 days?" I amazingly kept those rude comments to my own consumption. But guess what, her B.S. didn't stop. She said since we will be going to SGH for injection at 8ish in the morning and since I refused to remove her plug, than instead of admitting on Wed at 3pm, I should admit Charmaine at 8ish in the morning.

It was absurd to me. I just told her firmly that we will leave her plug in and we will admit at 3pm as planned! If, as and when, the plug doesn't work, we will remove and set a new one and I will not even contest that decision. But if does work beautifully, than no issues. I see no point in her coming in the midst of my girl's first try at doing a scan without any sedation, trying to talk to me about something so absurd. Couldn't she have picked a better timing? Maybe I looked so calm and composed that she thought it wouldn't matter. Maybe she thought that Charmaine seemed so comfortable that it was okay to disturb her mommy. But what if I saw something new on her scan, what if I just went hysterical? Yes, of course she would probably defend herself saying that she would never have walked in if she sensed that I wasn't feeling right. But hey, it's besides the point to me.

I'm not being personal here but I just wish that there would be more professionalism and compassion displayed. I understand her concern of me/char being discharged with a plug BUT we have been living this life for the longest time. We are not the general public that comes in once in a blue moon for a scan or have a plug set. It's probably her job to still bring me through the entire 'protocol' so if something happens, it's not their liability. Sigh. I always joke with the Admission Office at the Childrens Emergency that they should have a 'Priviledged Clientele' or Express Lane for patients like us so that we do not have to queue after the general public when we bring in our onco kids, with a neutropenic fever, their immune heavily suppressed, holding an Authorised Letter stating that its a medical emergency.

To us parents, its simply ridiculous and just non-sensical. And believe me, I've written so many feedback forms that they always give us, leaving my handphone number, my email and whatever contacts they need but I've never received any reply. From what I've heard, I'm definitely not the only parent who has provided feedback. Similarly, most of the times, we felt that it was just a pure waste of our effort to even fill up the forms that doesnt feel like they were even read by anyone.

Back to our SSN who walked in.

After I made known my stand on the plug, we went to the usual questions on her being healthy - no cough, no fever, no runny nose. And to those questions, I answered, "Charmaine is well although she does cough a little bit when she wakes up in the morning." Upon hearing my reply, she asked: "Ohhh, if thats the case, do you want to consider to postpone her MRI scan to 1 to 2 weeks later since the anasethetist will most slightly not go ahead with the procedure, given her cough."

NOT AGAIN. This is the umpteen times I've been asked this question!!! And now, in the midst of Charmaine having her bone scan! WHY. WHY. WHY. I know it seemed like a valid question to ask because it involves the risk of Charmaine going through G.A. But at such a timing? And asking me, the nerve wrecked mother to make the decision? I had no idea how my brain was even functioning but it amazingly was and came up with an answer even I was impressed. I said: "I will email Charmaine's primary physician and inform her of Charmaine's few coughs and wait for her instructions." With that, she finally finished whatever questions she had to ask and left the room.

To say that I am drained and exhausted doesnt even seem adequate.

Tuesday~~~
Tuesday at SGH, thankfully the injection went smoothly with no hitches.

But upon receiving my email, Dr Aung did call up the anasethetist and apparently spent some time trying to convince him that Charmaine is well enough to go through the GA on thursday. Her efforts were enough. She called me up on Tuesday requesting for me to bring Charmaine into The Pediatric Operation Theatre Reception earlier as the anasethetist wanted to see Charmaine himself before making the decision. I understood what that meant. More 'fighting' to come. Dr Aung did tell me that should I encounter any problems, be sure to get the doctor to call her instead.

Wednesday Admission~~~
Come Wednesday, I went earlier with Charmaine, met up with Dr Dilit which I must say is a very nice and patient doctor. 5 minutes into our exchanges, he went on to suggest that we should postpone it to at least 2 weeks later. Although I had anticipated this was going to be the main topic of our entire conversation, it still felt very exhausting and somewhat frustrating. To have to repeat myself over and over, again and again, trying to convince every other person along the whole process of getting scans done is just so tiring! It almost felt like the entire system is out to get me. It is his job to ask for postponement. It is his job to let me know the risks involved. He is doing what he is trained to do, and it is no fault of his. And it is my job to fight for Charmaine, to convince them how one shouldnt follow the protocols blindly, to explain our unique and urgent situation. It is my never-ending battle.

I said to Dr Dilit matter of factly that as her mother, I would be most concerned if I felt that she wasn't well enough to go through the G.A. In fact, I would be the first one to stop it. I consulted with Dr Aung as well. If Dr Aung felt that Charmaine shouldnt go through the procedure, I will respect that decision. However, since I feel confident that it was more of a dry throat thingy, and with Dr Aung's stamp of assurance, we needed the scan to proceed as plan. Because it is so important that Dr Aung has even pushed for Charmaine to go through 3 procedures on that Thursday itself.

Dr Dilit listened to my situation patiently and agreed that we can proceed ahead if all parties involved understood the risks, and when the benefits outweighs the risks. Charmaine doesnt cough during the day, even when I was discussing with Dr Dilit, she didnt cough a single time during the whole hour. Thats why I was certain that Charmaine is capable of undergoing the G.A. and because our treatment plan is dependent on this set of scan results, we need our results asap.

Propofol~~~
After we both agreed that the MRI scan and Bone Marrow Biopsy would proceed as planned, I went on to enqire about the drug they will use, specifically requesting Propofol.

I am not a trained professional, I have not spent any time researching on the pros and cons of using Propofol but Charmaine has used Propofol numerous times in MSKCC. Every time, the transition for Charmaine to wake up from the G.A. is very smooth with almost no issues. She is calm and she is alert, even happy!

Unlike the drug they use in KKH, which starts with a C something, it is all too traumatising. Charmaine will wake up agitated, disoriented, screaming, crying for mommy even when she is already in my arms for at least 30mins. And when she does finally calm down from all that crying and screaming, she would be totally exhuasted. As for me, I would be hating myself for having to put her through it, heartbroken seeing her struggle and fight everyone and everything unaware, wishing that I am the one suffering instead of her.

All these unnecessary suffering, for a simple MRI scan, just because KKH doesnt have a practice in using Propofol. I asked every single time from Feb to Apr, requesting for the anasethetist to use Propofol to no avail, because I could only speak to the Medical Officer whom I'm not even sure whether he/she did relate my request to the Consultant. We got lucky once in late April, I think, where Dr Bong was the consultant anasethetist whom I had the chance to meet and talk to personally because the procedure was going to be done in the Operating Theatre. She just returned from Boston, where they were trained to use Propofol. I discussed the many 'WHYs' in terms of the drugs used and the different sedation methods and the reasons of having to use a plug instead of the child's portacath for G.A.

I discussed some of the same questions with Dr Dilit too. One of the most prominent reasons stated is that what is in placed in KKH has been practiced for many many years and everyone is comfortable with what is being practiced. It is definitely not fair for me to say that one system is superior to the other. I am also not knowledgable enough to know the pros and cons between the different methods. In fact, when Dr Bong and Dr Dilit tried to explain, I was only able to follow half of whatever they said because it gets rather technical. However, from purely a mother's point of view, the stark contrast is simply too overwhelming to be disregarded. When the kids' porthacath can be used to administer the drug (which is one of the reasons why a portacath is even invented in the first place), why on earth would I want to subject my child to numerous plug setting which is all too painful. On top of that, you have to wish for tremendous amount of good luck to get a good Medical Officer who can actually do a decent job of setting a simple plug.

Trust me, most of the M.O.s can be as disastrous as the Houseman. And the drug propofol. Why would I want to put my child through such traumatising G.A. procedure when I know that there is the very existence of a drug that will work beautifully on my child? [Dr Dilit did eventually called a Senior Consultant experienced in using Propofol, Dr Serene Lim back for Charmaine's G.A. THANK YOU!]

A system that can be improved~~~
This is just to name a few. There are so many more frustrations for me. When we first returned from NYC, I was almost always frustrated, on top of being worried and stressed. Frustrated at the system which at times, just seemed so ridiculous. I fought every time, and I realised that I must have had passed on some of those frustrations and stress to Charmaine as well. I wasnt going to be easily convinced either. It gets on my nerves even more when people try to politically position their stand and totally go off topic. It got me so depressed, stressed and upset. From trying to calm me down with phrases like: "It takes times", Dr Aung finally told me one day to not fight the system too much. Sigh...

So ever since that day, we try to work around the system and I sort of just became nonchalent. I gave up trying to fight to make it better for other families because it was taking a huge toil on me.

And now that I've lived through more of such days, it really opened my eyes to a different perspective. One that is most probably inherent in our entire country, not only the medical system. The reality is such that most of us are aware of the flaws in the various systems, and yet, more than often, nothing will be done to even try and change it, until something disastrous happen. Take the lorry ferrying workers dangerously incident, we see it everyday. And until you see more fatal accidents happening, everyone just ignores the problem. What about the belting up of school kids in buses? The same applies for the medical system but I personally feel that it is going to take a whole lot more effort to improve the system. We have some wonderful, caring and loving nurses and doctors but they themselves succumb to the mostly old, rigid and inefficient system developed decades ago, and probably most suited to that decade.

Thursday MRI Scan ~
Having said all that, I just remember that I had forgotten to mention about what happened for our MRI scan. The blunder which is most unacceptable to me, even though I could easily guess how it came about.

When we admitted on Wednesday in preparatio for Thursday's scans and biopsy, I noticed that the Request Form put up for our MRI scan only stated 'FEMUR/KNEE' on the parts to be scanned. Our previous MRI scans in Feb and Apr were both consisting of 2 parts, namely the femurs and the pelvic area. Being careful and paranoid, I went up to the Medical Officers during their afternoon rounding and told them specifically that: "I need you to please double check with Dr Aung that she had indeed only ordered one part to be scanned - the femur only and not that the pelvic area was left out because of some sort of miscommunications again". They noted my request but never got back to me.

Later in the night, I finally got hold of a SSN to check on the status. She got back to me, saying that they added another Request Form with additional parts "HIP/PELVIS" after checking with Dr Aung apparently. That looked more correct to me but my instincts told me to be on constant alert mode after the past 2 weeks. I have a habit which I have developed over the past 1.5 years in the medical world, I ALWAYS LISTEN to the doctors' discussions or nurses discussions. Most of the times, most of the consultants dont make it a point to even make it discreet. And some even talk in such high decibel that all the families in the room can hear their child's case openly. I should say we are used to it. Nonetheless, I always tend to pick up the more subtle points which may not be transmitted over to us during such discussions.

The next morning, my 'listening' skills literally saved the day. Had it not been for my ears always being on the alert mode, I wouldnt dare imagine what could have happened. Already in a totally drained and stressed mode, anticipating Thursday's full day of scans and commuting, my ears didnt fail me.

It was about 8am when we reached the MRI suite with our SN. I was sitting down on one of the chairs with Charmaine while the nurse handed over Charmaine's medical files to the reception counter for registration. And than, while listening to Charmaine, I overheard their discussions; something about having 3 parts to be scanned. Immediately and instinctively, I focused all my attention onto them and continue to observe their ongoing conversation. I was quite certain I heard 3 parts and although I didnt catch the entire conversation, I was sure that something was amiss.

I went up to the counter, interrupted them and asked in a concerned state, what was the 3 parts that they mentioned. They mentioned something like: "Yeah, your doctor ordered an additional part last night on top on the 2 parts". I said while I wasnt sure what the 3 parts meant but Charmaine has always only needed to do 2 parts of body scan. Than they tried to explain to me: "There was this KNEE/FEMUR which is actually 2 parts but they are charging me as 1 part, and that on that same form under some instructions box, some doctor wrote a chunk of words which included "S.I. Joints which is the 2nd part and the new form that stated "HIP/PELVIC" is the 3rd part.

In all honesty, I try my best to educate myself with all the medical jargons and all these new drugs, new procedures that I am learning but it is very difficult to fully grasp all the concepts when I am retarded and stressed. And I didnt study biology during my school days so body parts isnt something I am good at.

I said anxiously that I wasnt informed that there was a new 3rd part to be scanned and what was this new part anyway. And if indeed there was a new part, WHY is there a need to scan a new part? I needed answers and I needed them fast. The reception clerk was very understanding and told me and the nurse that if we werent sure what was going on, it would be better to call our doctor to check before we proceed.

While our nurse was trying to reach Dr Aung, the clerk continued saying that, "Ya, better check it properly because one more part is more expensive". She missed the point entirely! I told her that I was more concerned that this additional part meant an additional 45mins of risk from G.A.! And with 3 parts to be scanned and one bone marrow biopsy to do done immediately after the MRI, it would mean we need at least more than 3hrs to complete the procedure! Oh god, and I have to rush Charmaine down for another MIBG scan at SGH at 2plus in the afternoon. Timing would be ridiculously tight with these additional 3rd part and I am getting even more freaked out whether she will wake up in time for the MIBG. On top of that, she has to be sedated for the MIBG!!!

While I was getting more panicky, our nurse informed us that Dr Aung said she was at ICU, couldn't talk, told our nurse to call Ward 76. ARGH. Not at this time Dr Aung. Our nurse, obviously wasnt aware of anything at all which is always the case. (I dont blame her) She managed to get hold of Dr Mya and I explained desperately on the phone to her, but I knew that she wasnt going to get what I was saying! She promised me to call Dr Aung and did call back.

I suggested to our nurse to just flip through Charmaine's old files which should contain her previous Request Forms so that we can compare. We found the one dated April which stated "Lower Limbs". The first one in February was nowhere to be found. Great, ISO someone? Incomplete or missing forms and documentations???

When she called back, she said that the S.I. joints were included in the last scan so its correct. ARGHHHHHHHHHH! It wasnt correct! For godsake, I dont even know WHAT is this S.I. JOINT! All I knew was that it had always been 2 parts!!! And than I turned around and saw Dr Aung rushing over. She just nodded her head and went straight into the MRI suite to talk to the radiographer. I was so relieved.

Guess what, she came out 10mins later and said she got everything sorted out. They will scan as per our previous scans which included her sacrum and that its 2 parts. She also said she should have remembered the words clearly. I was so relieved that we finally sorted out this confusion BUT I couldnt get over the fact that had I not been alert enough, Charmaine would have to go through an additional whatever part which would have been totally redundant and unnecessary!!!

How the miscommunication could have arisen~~~
I already got everything figured out as to how this confusion could have arisen. Although I cant say I am 100% certain, I am somewhat sure that my guess or assumption isnt far from the reality. What happens is that most of the times, Consultants would be giving instructions verbally to the team of Medical Officers and Houseman during their morning rounds. And we all know the potential of how easily information could be misinterpreted or just not conveyed across clearly. My guess for what happened in Charmaine's case is that as Dr Aung was giving the instructions, whether the MO or HO writing down the instructions wrote the parts and in the first case, missed the pelvic area or Dr Aung had simply forgotten to mention the pelvic area. I corrected the situation.

Next comes to the part where the person writing the words (in this case the MO or HO) and the person reading the words (in this case the radiographer) interpreted very simple and basic words differently!!! The person who wrote down our form wrote in such a way I found it rather absurd but maybe its a dcotor's lingo. The doctor wrote "FEMUR/KNEE" and "HIP/PELVIC". In simple english, I read it as Femur OR KNEE and Hip OR Pelvic. It didnt make sense to me but I dont know how the radiographer read it though. And than somewhere in the form, someone wrote a para, in it a S.I. Joints which happened to be another body part. My assumption is that whatever word that constitutes a body part, the Radiographer would include that in the scan...

A suggestion~~~
I thought that maybe the form should just include a small skeleton picture of a body so that the ordering doctor can mark clearly on the picture which are the parts that he/she need to be scanned, on top of just writing in mere words. Doesnt a picture speak a thousand words? Or maybe in Charmaine's case, state very clearly that this is meant to be a comparision from her previous scans?

My 2 cents worth~~~
Well, the whole point of me writing such a naggy long story is my wish to highlight to everyone the need to seriously listen and scrutinise everything, down to forms and words, and even conversations. Nurses and doctors, please pardon me. I have no wish to offend but I feel that such scrutiny from parents and families would help greatly in ensuring that blunders and miscommunications are kept to a minimal. Every nurse and every doctor has many cases and patients to look after, and I honestly do not expect them to remember every case down to the simplest detail. But until the day we have a really efficient system, doctors and nurses may have to tolerate families probing and questioning and caregivers will have to remember never to let loose their guard.

I used to find it totally absurd when I read articles of hospitals operating and removing entirely wrong parts of a patient's organ or just doing totally different procedures that's so wrong and so unrelated. But now, I think it may not be that impossible afterall. All it takes is for a doctor to write a 'Left' instead of a 'Right' and you may find yourself losing your perfectly healthy left leg instead of a diseased right leg. I know its simply ridiculous to cut off a healthy left leg compared to a right leg that probably looks dead but I'm just quoting an extreme example.

In all fairness, I must say that doctors in Singapore are mostly still wonderful and reliable. However, just like the advertisments on TV telling us not to take Singapore's safety as granted, I feel that all of us should not take the medical care of our loved ones for granted either.

While trust is important to maintain a healthy relationship between doctors and families, the entire medical system is just too complexed and too layered, and when information is passed on from one layer to another, important bits may get lost in transmission. Hence, please do pay extra attention and please dont have that "I dont know, I leave everything to my doctor" mindset. Unfortunately, 'YOUR DOCTOR' is not the only doctor taking care of you and in most cases, most of the decisions are made by other doctors trained to follow a certain protocol rather than treating you as an unique individual. And we are not the only patient 'OUR DOCTOR' has.

Charmaine~~~
Charmaine is doing well physically except that some pain developed in her right knee on Saturday afternoon. I'm giving her panadol and observing her closely. Thankfully, there's no swelling. The pain seemed to have eased a little since Saturday however Charmaine says that she can still feel the pain and is able to tolerate it. Please do keep your prayers coming in. Praying for Charmaine's pain to be nothing more than just over-exerting her own knee and that with sufficient rest, her pain would subside totally.

Thank you everyone.
I'm praying for everyone's good health and happiness.
Thank you.

Love,
Cyn mommy